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Abstract
There has been rapid progress in palliative care in Africa since the World Health Assembly in 2005 which identified palliative care as an urgent humanitarian need. Palliative care is now recognised as a basic human right, and momentum has gathered to translate this into action. From being significantly present in only five countries in 2004, palliative care is now delivered in nearly 50% of African countries. Even so, still less than 5% of people in need currently receive it, and with an estimated 300% increase in the need for palliative care for people with non-communicable diseases over the next 20 years, and with those living with HIV needing more prolonged support, the demand for palliative care will continue to outpace supply. African countries adopting a public health approach and networking together through palliative care associations are beginning to embed and integrate palliative care into health systems and communities. Current challenges are to increase coverage while maintaining quality, to develop dynamic and flexible responses to the changing illness patterns in Africa, and to counter false beliefs. Resourcefulness and harnessing new technologies such as mobile phones while respecting cultural traditions, may be the way forward. The authors review recent progress in policy, service provision and training initiatives in Africa, illustrate the current situation at grass roots level from a recent evaluation of programmes in Kenya, Malawi and Uganda, analyse the current urgent challenges and suggest some ways ahead.
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Policy progress
Palliative care has only recently been prioritised in Africa: in 2002 the Cape Town Declaration asserted that pain relief was a human right, and that palliative care should be incorporated into national healthcare strategies.1 This spurred the formation of the African Palliative Care Association (APCA), which resolved that everyone with a life-threatening illness should have access to affordable and culturally appropriate palliative care. In 2005 the World Health Assembly called upon all member states to adopt a national palliative care policy, ensure the availability of morphine in all healthcare settings, and progressively adopt minimum standards for pain relief and palliative care.2 In 2006 the Declaration of Venice committed to developing a Global Palliative Care Research Initiative, recognising specifically that research within Africa was essential. In 2007 four factors were clearly identified and documented as key to establishing comprehensive and equitable coverage worldwide. These factors had particular relevance for the roll out of palliative care in Africa: appropriate government policies, the education of health professionals, a means of delivering palliative care and adequate drug availability.3
Progress with services throughout Africa
Palliative care in 2004 was nationally integrated in only five African countries,4 but by 2010 was delivered in 28 out of 57 countries. Eight palliative care providers in 2004 rose to 87 in 2010. Over 141 donors, including six multinational, 19 bi-lateral, 54 humanitarian, 27 faith-based, 21 business and nine hospice support organisations, are now taking palliative care forward.5 By 2010, morphine was available in 48 countries. However, a recent study in Kenya revealed that only seven out of 250 public hospitals had oral morphine available to treat severe chronic pain.6 Fear of morphine being diverted for illicit purposes and taxation of morphine powder were highlighted as barriers. In 2001, there were three national Palliative Care Associations in Africa, now there are 11, with more being developed (table 1). Kenya, Malawi, South Africa, Tanzania, Uganda and Zimbabwe all have developed some specialist services for children.7 However, much of the current care is being delivered outside national health systems and little government money is allocated for mainstream palliative care.
National palliative care associations in Africa
New training resources and qualifications for health professionals in Africa
A range of excellent local and national resources were created by Help the Hospices in 2008 and APCA in 2010 (box 1). These manuals, guidelines and standards cover the provision of holistic care in the community and in hospitals. Tools developed and validated in Africa, such as the African Palliative Care Outcome Scale, are recommended for routine clinical use as well as audit and research. These resources have much to teach clinicians in high income countries where such standards are often lacking, even in specialist units.8 Palliative care groups have been established in four universities alongside regional hospitals: Cape Town and Witwatersrand in South Africa, Makerere in Uganda and Nairobi in Kenya. An increasing number of postgraduate and undergraduate degrees are now available such as a BSc at Makerere University via Hospice Africa Uganda in partnership with APCA, and an MSc/postgraduate diploma at the University of Cape Town. Palliative care teaching is being incorporated into the undergraduate nursing and medical curricula in Uganda, South Africa, Kenya, Malawi, Botswana and Zambia.
Box 1 Resources published since 2008 (accessed 27 July 2011)
Bond C, Lavy V, Wooldridge R. Palliative Care Toolkit: Improving Care from the Roots Up in Resource-Limited Settings. London: Help the Hospices, 2008. http://www.helpthehospices.org.uk/
Lavy V. Palliative Care Toolkit Trainer's Manual. London: Help the Hospices, 2009. http://www.helpthehospices.org.uk/
African Palliative Care Association. Standards for Providing Quality Palliative Care Across Africa. Kampala: APCA, 2010. http://www.hospicecare.com/standards/APCA_Standards_AW.pdf
African Palliative Care Association. Beating Pain: A Pocket Guide for Pain Management in Africa. Kampala: APCA, 2010.
African Palliative Care Association. A Handbook of Palliative Care in Africa. Kampala: APCA, 2010.
African Palliative Care Association. Guidelines for Ensuring Patient Access to and Safe Management of Controlled Medicines. Kampala: APCA, 2010.
African Palliative Care Association. Using Opioids to Manage Pain: A Pocket Guide for Health Professionals in Africa. Kampala: APCA, 2010.
African Palliative Care Association. Successful Advocacy for Palliative Care – A Toolkit. Kampala: APCA, 2010.
African Palliative Care Association. Palliative Care Outcome Scale. Kampala: APCA, 2010.
There has been an exponential increase in palliative care publications. A PubMed search using keywords such as Africa, palliative, pain, terminal, dying, end-of-life and hospice, found 152 papers, of which only 20 were written before 2000 (table 2), and 23 of which were published in 2010. Before 1995, most papers considered specific clinical issues, but since 2006 research has covered the development of outcome tools, nurse and patient perspectives of care, drug availability and programme evaluation. However, only four African journals have published an article on palliative care.
Number of publications on palliative care in Africa
Evidence from the field in Kenya, Malawi and Uganda in 2009
We sought to understand if and how palliative care in 2009 was making a difference at the grass roots level in Africa. We evaluated the impact of three local African palliative care programmes (box 2).9 10 These findings illustrate the challenges that are discussed in the final section.
Box 2 The impact of local palliative care programmes in Kenya, Malawi and Uganda10
The effectiveness of these programmes lay in the extent to which they delivered care that was accessible, culturally appropriate and responsive to patient's needs.
While patients' needs were multiple and rapidly changing, the health systems were frequently static, inflexible and arranged in silos of care: “I get my AIDS medicines from the health centre, but I have to go to hospital for my drugs for Kaposi's sarcoma”. Patients with comorbidities struggled to visit multiple health providers, which was time-consuming and difficult. Pain relief was acutely needed, but so too was food, basic shelter and school fees: “My house leaks when it rains, and the bedding is not enough. I wish the team could help mend my house”. Patients sought help from traditional healers which was both costly and led to late presentations with advanced diseases: “I took him to over 20 traditional healers… I spent over a million shillings on medical care that failed to heal him”.
Oral morphine, when available, significantly reduced patient's severe pain and made their and their family's lives more bearable. Its efficacy also encouraged staff to keep going in what was emotionally painful work. A community nurse noted: “Now we are observing that something can happen to let people die in peace… People died in agony before, but now we realise the importance of controlling pain”. Community volunteers, used by all programmes, created bridges between staff and patients, and were instrumental in embedding a primary palliative care approach within the community: “Volunteers hear that someone is sick, and they come tapping at the door”.
Instilling hope through home visits, touching the ‘untouchable wounds’, being gentle at the bedside, providing tools for care (gloves, soap, pain relief), hearing out carer's anxieties and re-affirming to families that their care was good enough, made a remarkable difference to patients and their families: “It will be okay, because we are together, even if your husband is going to die”. Community education was starting to address the stigma of cancer as well as AIDS: “People still think cancer means death that very day”, and shifted attitudes where people believed the ‘incurable’ were untreatable. In homes with no water or indoor toilets, mobile telephones were used to create continuity of care, with volunteers and patients ‘flashing’ nurses on their mobile phones, and receiving call-backs for advice or visits. This evaluation affirmed that despite severe poverty, opportunities do exist to improve how people die.
Challenges now facing palliative care in Africa and potential solutions
Limited coverage: how to increase coverage and morphine availability
Building equitable access while retaining quality remains the most acute and demanding challenge.11 12 If systems already face endemic health worker shortages, and there is a lack of basic medicines and equipment, it is difficult to provide an additional comprehensive service. Palliative home based care kits, mobile palliative care units and mobilisation of community and family structures can be used to overcome the human and resource shortages, and the barriers to accessibility. Oral morphine remains the most effective analgesic for pain control, and is easily administered and widely used. New ways of getting morphine to patients require changes in knowledge, attitudes and skills in pain management alongside national changes in prescribing and regulatory decisions at multiple levels. Introducing such training at undergraduate level, challenging restrictive government and societal policies and beliefs about morphine, and creating a new public engagement about morphine are urgently required. Addressing the challenge of broken supply chains needs to be prioritised within national central medical stores, provincial and district hospital service management services and transport systems. The recent total absence of a stock of morphine throughout Uganda underlines the necessity for such action.
Delivering care to those living in poverty
Palliative care can be delivered to those living with and in poverty, but in the face of poverty, it cannot just be about analgesia. Patients and families need basic food and a warm, safe and dry place to live. Programmes currently engaging with local social welfare systems and partnering with other organisations to deliver shared comprehensive care are achieving results. It is less easy, however, for palliative care services working from within the health system in hospital structures to link and coordinate care with non-governmental organisations (NGOs). Alongside this, smaller NGOs and community based organisations often are so busy delivering day-to-day care that advertising their services to others is not a priority, but this can prevent effective referrals. More analysis needs to be carried out mapping and integrating, especially to health services, the multiple smaller programmes that do provide social or nutritional assistance. Establishing social workers in hospitals can also begin to create the network of services, and help develop more integrated care. In summary, palliative care can and is being delivered in the face of poverty through integrating health and other services, involving the community, and harnessing innate cultural resources, while also using innovative low-cost technology as detailed in the following paragraphs.
Integrating services in primary care and hospitals
Programmes funded by external donors often create islands of excellence that are not easily extended. To become cost effective and sustainable, integration of palliative care within primary care and across the many vertical disease programmes is essential. Currently, patients (especially those with HIV) may make separate journeys to health facilities for analgesia, for therapy or for treatment of side effects. Explicit frameworks are urgently needed to develop a systematic palliative care service throughout the disease course.13 Simultaneously, more effort needs to be put into establishing hospital based palliative care programmes. In the main referral hospital in Uganda, over 45% of inpatients have palliative care needs (unpublished report). Many of these patients receive either aggressive treatment, or, conversely, no treatment at all. Discharge planning and processes to enable co-ordination and effective integration across care settings are needed.
Facilitating a primary care approach to palliative care through community volunteers
Local community volunteers can be the eyes and ears of programmes, by case finding, building relationships with patients, the care team and the community, providing information, and delivering social, emotional and spiritual support. Maintaining volunteer training and motivation is difficult, especially when the volunteers work alongside employees. Volunteers have spoken about the ‘moral imperative’ to care, arguing that we can do no other in the face of such need and suffering among those in our communities, but have noted that time with others is time away from their own families, farms or the market place. Traditional methods of encouraging retention have included the provision of bicycles, bags and additional remunerated training. But these ways are not necessarily dealing with the underlying volunteer problem which in many cases is an economic issue. Ways to promote and sustain volunteers in primary care are needed.14
Increasing community knowledge
Community knowledge of palliative care is low, and parallel systems of care, such as local traditional healers and private clinics, while offering local care can unfortunately undermine and delay access. Our own studies carried out in Malawi, Kenya, Zambia and Uganda, and a review of the literature show that substantial numbers of patients use traditional healers. Patients state that the intent of most traditional healers is to cure, and that treatments were taken in the hope of recovery. Patients subsequently present to hospitals late, often having spent much on futile ‘cures’. The task at hand is to empower communities, including traditional healers as well as all healthcare providers, to understand that palliative care can make a difference and that community members can provide such care if trained and supported by local clinics and leaders, with timely referral available.15
Challenging cultural beliefs
Traditional beliefs about death and dying are multiple and complex. Accepting death as ‘a path we all must tread’ provides space for families and patients to talk about dying.16 In some societies beliefs about the contaminating effect of the dead and the fear of breaking bad news need to be addressed. Compounding community reaction was often an assumption that if after all the cure seeking, the patient was not going to get better, then it was better for them to return to their homesteads, often in family villages where no treatments were available, and wait for death. Promoting a message that supportive treatment is important even when cure is not possible, and challenging fears about the process of dying require engagement with all community members.
Responding to changing needs for palliative care
Over the past 15 years much palliative care in Africa was developed in response to the AIDS pandemic, and structured to deliver home care for terminally ill patients. But antiretroviral (ARV) therapy is changing HIV to a chronic disease. The danger is that programmes will lag behind this transition, continuing to deliver home care for those who are now mobile, or that donors and governments may see less need for palliative care although it must remain integral to comprehensive HIV programmes even in the presence of ARV treatment.17 Donors and new nationally integrated funding mechanisms are necessary to fund palliative care according to need, not diagnosis. The encroaching burden of other chronic diseases in Africa such as cancers, heart failure, diabetes, respiratory disease and chronic lung disease, is placing new demands on services. The trajectories of these various diseases need to be understood before a more dynamic and comprehensive palliative approach can be built. Palliative care from the diagnosis of a life-threatening illness needs advocacy in Africa as much as it does in high income countries.18
The burden of cancer
“Cancer is ‘hidden in the shadow of AIDS’ in Africa.”19 Curative and disease-modifying cancer treatment is limited, and often available only to a small rich minority. While over 55% of people with cancer would benefit from radiotherapy, Africa has less than 2% of all radiotherapy cancer centres globally.20 Cancer deaths are expected to rise sixfold by 2050 due to an ageing population, little screening or early detection, minimal access to treatment and HIV related cancers. Late presentations (estimated as at least 80%) further increase the need for palliative care. Cancer is stigmatised as a disease of death, yet there is little understanding of this. Patient-centred research is thus needed, as well as the development, testing and implementation of care accessible and acceptable to all in need.
Children
Almost half of child deaths globally were in Africa in 2007. Population pyramids in every African country are weighted heavily with young people under the age of 15. The provision of palliative care for children is a major challenge, and includes supporting children who are caring for their parents or siblings, or are bereaved.7 21 The number of dedicated children's palliative care programmes can be counted on one hand. More research is urgently needed on pain management and pain options for young people. Care needs to be family-centred yet recognising the unique needs of children and adolescents.
New technologies
Health workers, patients and families, even in remote areas, are adapting new technologies for healthcare, as highlighted in the recent mHealth Africa Summit. We found that even in homes with no running water or electricity, mobile phones, almost unknown 15 years ago, are now used to provide a sophisticated form of palliative tele-health. Airtime is costly, so families and volunteers ‘flash’ nurses on their mobile phones, and nurses call back. Thus volunteers are mentored, patients and carers spoken to, and access to competent care greatly expanded. The challenge is to maximise the opportunities to increase access and continuity of care using these innovations. Research questions in this area include: What other information and support can be delivered via mobile phones? Can carers and patients order medications through phones? Can consultations be carried out? How can air time be secured?
Developing local research
There is still a dearth of local research because of the urgent need for service delivery, few locally validated outcome tools, and the lack of opportunity and resources for local experts to voice their understanding and participate.11 Collection of routine mortality data is greatly improving, but this still tells us little about the nature of dying.22 National political and health leaders require a sound knowledge base to understand the complex burden and best models of care.
Conclusions
Palliative care must address total pain and suffering. Widely accessible and effective analgesia is a great unmet need in Africa, but morphine in isolation is not enough. Palliative care, to be effective, affordable and sustainable, must be integrated and prioritised in mainstream services alongside curative and preventive care. Palliative care is possible in poverty by building on community capital, acknowledging patients' great physical and social needs, and providing psychological and spiritual support. A community oriented approach must be adopted to respond to local needs and customs, with accessible referral pathways between and across services and into hospitals. Care utilising innovations such as mobile phones should be responsive to dynamic individual and population needs as non-communicable diseases are increasingly predominant.
Acknowledgments
The Diana Princess of Wales Palliative Care Initiative funded the evaluation described in box 2.
References
Footnotes
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Funding This work was supported by The Diana Princess of Wales Palliative Care Initiative.
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Competing interests None.
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Provenance and peer review Not commissioned; externally peer reviewed.