By Professor Julia Downing.
Never before has there been such a global recognition for the need for palliative care and a commitment to providing it.
There is great need for palliative care services globally. The World Health Organisation estimates that around 20 million people need palliative care at the end-of-life every year and similar numbers are anticipated to need palliative care in the year prior to death. Therefore it is estimated that around 40 million adults and children need palliative care each year and around 8% of those needing palliative care live in low and middle income countries and 6% of those needing palliative care are children.
This need was recognised in the passing of a resolution in palliative care by the World Health Assembly in 2014 which calls for the integration of palliative care into the health care of all member states, stating that this is not an option, but that palliative care should be an integral part of every health service and that the provision of palliative care to those who need it is a human right – thus strengthening the impetus for palliative care development worldwide.
Various studies have been undertaken that have mapped the development of palliative care around the world, with the Worldwide Palliative Care Alliance producing a global update in 2011, and a Global Atlas of Care at the End of Life, with the WHO, in 2014. These show that whilst there has been significant progress in the development of palliative care around the world in the last decade e.g. in Africa, there is still a long way to go with many countries still having no, or limited palliative care service provision.
Similar studies have mapped the development of children’s palliative care around the world, which lags behind that for adults. A study undertaken by UNICEF and the International Children’s Palliative Care Network (ICPCN) in 2013, looked at the need for children’s palliative care in Kenya (120 per 10,000 children), South Africa (152 per 10,000 children) and Zimbabwe (181 per 10,000 children), as compared to studies in the UK which found that 32 per 10,000 children needed palliative care and mapped this against service provision, showing that in South Africa and Zimbabwe around 5% of those children who need palliative care have access to services, and in Kenya less than 1%. Thus the need for children’s palliative care is great, but the capacity to deliver services is limited.
Development of Palliative Care Services
Palliative care services can be developed through the framework of the public health model for palliative care which gives four foundation measures for palliative care development: Policy, Availability of medications, Education and Implementation, with research having been suggested as the fifth foundation measure or pillar for service development. These foundation measures have been helpful in the work that I have been involved in over the last fifteen years to develop palliative care initially in Uganda, then across Africa and more recently in Serbia and internationally. Thus this paper will share a few of my experiences in Uganda, Africa and Serbia.
Increasing access to palliative care, whilst urgently needed, has its challenges, and key to the development of palliative care services is a common understanding of the definition of palliative care. The most common definition being used around the world is that of the WHO’s definition of palliative care for adults and children i.e.:
‘Palliative care is an approach that improves the quality of life of patients and their families facing the problems 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.’ 
‘Palliative care for children is the active total care of the child’s’ body, mind and spirit, and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child’s physical, psychological and social distress. Effective palliative care requires a broad multi- disciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in community health centres, and even in children’s homes’ .
Other challenges can be seen at different levels including socio-cultural, governmental, legalistic and the national context, with the service provider and at the service user level itself. Meeting the complex needs of those needing palliative care can be difficult, especially in low resource settings where there are limited resources including a lack of health and social professionals; a lack of funds, a lack of specific training, a lack of recognition of our role as nurses, social workers etc.; and a lack of recognition of the need for palliative care.
In many countries, such as Uganda, 80% of patients with cancer will present with advanced disease, and thus there are limited treatment options, with the availability of treatments such as chemotherapy and access to radiotherapy being limited (29 out of 52 African countries have no radiotherapy facilities i.e. approximately 198 million people).
However, despite these, and other challenges there are many strengths for the delivery of palliative care in sub-Saharan Africa including expertise, enthusiasm and commitment to the palliative care service delivery and training in palliative care. There are numerous best practice models of palliative care service delivery ,  and training, with co-ordination of services through well developed national palliative care associations (e.g. the Palliative Care Association of Uganda -PCAU) and a regional association – the African Palliative Care Association (APCA) . Integration of palliative care into existing structures is important in order to ensure sustainability, and the concept of ‘holistic’ care is not new, and is central to the beliefs and philosophy of many African cultures.
The development of palliative care in the region was supported by the Cape Town Declaration in 2002 which stated that palliative care is a right of every adult and child with a life-limiting disease and should be part of national health plans and provided in a way that is accessible and affordable for all. It should be provided at all levels of care including primary, secondary and tertiary and training in palliative care is paramount. Subsequent advocacy for palliative care in the region has been based on this declaration and has included high-level meetings such as the Ministers meeting at the APCA Conference in Johannesburg in 2013.
Examples of how services have developed
Much has happened in the development of palliative care in Uganda, with the coverage of palliative care services expanding from being in just one district in 1993 through the opening of Hospice Africa Uganda (HAU) in Kampala, to 57 districts spread all over the country. Some of the achievements in terms of policy, education, training and implementation can be found in Table 1.
|Table 1: Some of the achievements in Uganda |
||Availability of Medicines
Some recent examples of work that I have been involved in Uganda, and across sub-Saharan Africa, include:
1) The development of Beacon Centres for children’s palliative care in Uganda (Mildmay Uganda), Tanzania and South Africa in order to improve access to children’s palliative care through trained health care professionals and the provision of high standard clinical services, focusing on the outcome of improved children’s palliative care for all who need it .
2) A project to: “Strengthen and integrate Palliative Care into national health systems through a public health primary care approach in 3 African countries to contribute to meeting the targets of MDG goal 6”, which is managed by the University of Edinburgh and funded by the UK’s Department for International Development, through the Tropical Health Education Trust (THET). The project began in and aims to integrate palliative care into systems, policies, practice and communities in Kenya, Rwanda, Uganda and Zambia. The impact of the project has been encouraging and an evaluation will take place later in 2015.
3) A link nurse programme to improve palliative care provision within Mulago Hospital, the national referral hospital, through training nurses from different wards/ areas of the hospital in order to increase access to services and improve linkages and referrals to the palliative care team. 27 nurses have been trained from 11 different clinical areas within the hospital and an evaluation of the programme is being written up.
4) The development of a children’s palliative care outcome scale – the APCA C-POS . This is a process that began in 2009 following on from the development of a palliative care outcome scale for adults (APCA African POS , ) and was completed late 2014, with the final paper and the tool about to be published. It will be the first outcome measure for children’s palliative care and has been developed across several countries in the region including Kenya, Malawi, South Africa, Uganda, Zambia and Zimbabwe.
Palliative Care in Serbia
Whilst the environment and culture in Serbia is very different from that of sub-Saharan Africa, the principles of the development of palliative care utilising the public health approach can be applied in different settings and provided a good framework for the development of services through the project ‘Development of Palliative Care Services in Serbia’ – a projected funded by the EU and implemented by a consortium led by Oxford Policy Management (OPM) between 2011 and 2014. The project implemented aspects of the action plan approved by the Ministry of Health alongside the national strategy for palliative care in 2009 . Central to the strategy was increasing palliative care capacity through education, improved policies, increased access to medicines and the integration of palliative care within the governments health system. Some of the achievements in terms of policy, education, training and implementation can be found in Table 2.
|Table 2: Some of the achievements through the EU project in Serbia |
|Availability of Medicines
The ongoing development of palliative care throughout the world is emphasised through the resolution passed by the World Health Assembly in May 2014, on the strengthening of palliative care as a component of integrated treatment for all in need (men, women and children). Never before has there been such a global recognition for the need for palliative care and a commitment to providing it. It is an exciting time for palliative care and as we continue to strive towards increasing access around the world it is important that we collaborate together, share our lessons learnt and support Ministries of Health in the implementation of the WHA resolution.
I would like to acknowledge all my colleagues working in palliative care around the world with whom I have been working, in particular my colleagues in Uganda, across sub-Saharan Africa and in Serbia.
1: WHA (2014) Strengthening of palliative care as a component of integrated treatment within the continuum of care. 134th Session of the World Health Assembly. EB134.R7 May
2: WHA Resolution 2014 (As Above)
3: Clark D and Wright M. International Observatory on End of Life Care: A Global View of Palliative Care Development. J Pain Sympt Manage 2007; 33(5); 542-546.
4: WPCA (2011) Mapping level of PC Development: a global update 2011. WPCA London
5: Connor S and Sepulveda Bermedo MC. Global Atlas of Palliative Care at the End of Life. UK: Worldwide Palliative Care Alliance, 2014.
6: Grant, L. Downing, J. Namukwaya, E. Leng, M and Murray, S. 2011 Palliative care in Africa since 2005: good progress but much further to go. BMJ Support Palliat Care 2011;1:118-122 Published Online First: 6 August 2011
7: Knapp C, Woodworth L, Wright M et al. (2011) Pediatric Palliative Care Provision Around the World: A Systematic Review. Pediatric, Blood and Cancer. 56 (7).
8: Fraser LK, Miller M, Hain R et al (2012) Rising national prevalence of life-limiting conditions in children in England. Pediatrics 129(4): e923–9
9: Connor SR, Sisimayi C (2013) Assessment of the Need for Palliative Care for Children. Three Country Report: South Africa, Kenya and Zimbabwe. UNICEF and ICPCN, London, November 2013.
10: Stjernsward J, Foley KM, Ferris FD. The Public Health Strategy for Palliative Care. J Pain Sympt Manage 2007; 33 (5): 486-493.
11: Harding R, Selman L, Powell RA et al. (2013) Cancer Control in Africa 6. Research into palliative care in sub-Saharan Africa. Lancet Oncol. 14: e183–88
12: World Health Organization. Definition of Palliative Care. 2002, http://www.who.int/cancer/palliative/en/ Accessed 13th April 2013.
13: World Health Organization. Definition of Children’s Palliative Care. 2002, http://www.who.int/cancer/palliative/en/ Accessed 13th April 2013.
14: Mwangi-Powell F, Ddungu H, Downing J, Kiyange K, Powell RA and Baguma A. 2010; Palliative Care in Africa; In Oxford Textbook of Palliative Nursing; Ferell BC and Coyle N; Oxford University Press, London.
15: Mwangi-Powell FN, Powell RA, Harding R. Models of delivering palliative and end-of-life care in sub-Saharan Africa: a narrative review of the evidence. Curr Opin Support Palliat Care 2013;7:223-228.
16: Downing JD, Marston J, Selwyn C, and Ross-Gakava L. 2013. Developing children’s palliative care in Africa through beacon centres: lessons learnt. BMC Palliative Care. 12:8. DOI: 10.1186/1472-684X-12-8.
17: Rawlinson FM, Gwyther L, Kiyange F, Luyirika E, Meiring M, Downing J. 2014. The current situation in education and training of health-care professionals across Africa to optimise the delivery of palliative care for cancer patients. ecancer 8:492 doi: 10.3332/ecancer.2014.492
20: (2002) The Palliative Care Trainers Declaration of Cape Town November 12th, 2002. Journal of Palliative Medicine 6(3) 339
21: Downing J, Namisango E, Kiyange F, Luyirika E, Gwyther L, Enarson S, Kampi J, Sithole Z, Kemigisha-Ssali E, Masclee M, Mukasa I. (2013) The Net Effect: Spanning diseases, crossing borders – highlights from the 4th triennial APCA conference and annual HPCA conference for palliative care. ecancer 7:371 DOI: 10.3332/ecancer.2013.371
22: Ministry of Health, Palliative Care Association of Uganda, Open Society Initiative for East Africa. (2012) The Development of Palliative Care in Uganda. Ministry of Health, Kampala, Uganda.
23: History of PC in Uganda document (as above)
24: Downing JD, Marston J, Selwyn C, and Ross-Gakava L. 2013. Developing children’s palliative care in Africa through beacon centres: lessons learnt. BMC Palliative Care. 12:8. DOI: 10.1186/1472-684X-12-8.
26: Downing J, Atieno M, Powell RA, Ali Z, Marston J, Meiring M, Ssengooba J, Williams S, Mwangi-Powell FN, Harding R and the APCA AIDSTAR Project Advisory Group. (2012) Development of a palliative care outcome measure for children in sub-Saharan Africa: findings from early phase instrument development. European Journal of Palliative Care. 19(6) 292-295
27: Powell RA, Downing J, Harding R, Mwangi-Powell F, and Connor S; 2007; Development of the APCA African Palliative Outcome Scale; Journal of Pain and Symptom Management. Vol 32, No2, February, p229-232
28: Harding RA, Selma L, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll T, Mpanga Sebuyira L, Panjatovic B and Higginson IR; 2010; Validation of a core outcome measure for palliative care in Africa; the APCA African Palliative Outcome Scale. Health and Quality of Life Outcomes. Vol 8, No 10.
29: Republic of Serbia. National Palliative Care Strategy. 2009. Belgrade.
30: Milicevic N, Haraldsdottir E, Lukic N, Baskott J, Rayment C and Downing J. Palliative care development in Serbia. European Journal of Palliative Care. January 2015.