Introduction
By Dr Richard Harding, Research Fellow, Department of Palliative Care and Policy, Guy's, King's and St Thomas' Medical School, King's College, London
Palliative care is increasingly recognised as a required component for quality HIV clinical management (1). In both industrialised and developing countries, palliative care is needed firstly for impeccable pain and symptom management and support throughout the disease trajectory.
Secondly, in the light of anticipated increasing antiretroviral provision, palliative care is required to manage toxicities and side effects and promote adherence to antiretroviral therapy,.
Thirdly, it is necessary to provide end-of-life care for those whose treatment is inaccessible or for whom it fails, and for those who continue to develop terminal diagnoses such as malignancies and end stage liver disease. A recent systematic review of palliative care on HIV patient outcomes found significant improvements in pain & symptom control, anxiety, insight, and spiritual wellbeing (2).
Although palliative care should be integrated in clinical care from the point of diagnosis, the lack of diagnostic and curative facilities as well as late disease presentation in resource-poor settings dictate the need for palliative care to be a large component of care from the point of first contact.
The international health development community has identified the need for palliative care as a component of public health services (3). The majority of effort is focused on Sub-Saharan African, where extrapolation from UNAIDS figures and clinical pain prevalence data suggest that in 2003 1.84 million people died from AIDS in pain.
In response to the growing funding, policy and practice focus on palliative care, particularly in Sub-Saharan Africa, the Diana Princess of Wales Memorial Fund commissioned an appraisal of current activity and potential for expansion through its Palliative Care Initiative. The review aimed to highlight examples of good practice and isolate factors associated with success, thereby informing and guiding the development of quality palliative care.
A series of recommendations have been proposed in the light of the review, and these recommendations focus on a set of key areas:
1. Advocacy
2. Integration and coverage
3. Education and training
4. Drug Access
5. Data systems
Advocacy
As palliative care is often a novel discipline in Africa, accompanied with much fear around morphine use, advocacy activity by NGOs and providers has been crucial to success. Particular areas of activity necessary to enable provision of palliative care have been to address restrictive legislation with respect to opioids legislation and inclusion of palliative care in health care policy.
Key activities in achieving this have been the dissemination of demonstration projects to show palliative care services developed and delivered by indigenous health care workers, and lack of problems (addiction, misuse) of morphine, have been successful in encouraging palliative care projects across the region. Advocacy requires excellent networking and common goal setting, as well as adequate resourcing, to ensure a critical mass of credible advocates
Integration and coverage
HIV home-based care without palliative care in sub-Saharan Africa has been termed "home-based neglect", and it is essential that existing HIV care providers graft palliative care onto their existing services.
Multisectoral collaborative responses are needed to meet the total care needs of families and communities supporting provision of palliative care. A single provider is unlikely to hold adequate skills or funding.
Simple, protocol-led palliative care provided by all can greatly improve the quality of care and reduce suffering e.g. TASO. A current challenge is to reduce the isolation of palliative care "centres of excellence" to ensure greater sustainable coverage and effective referral systems.
However, not all HIV care services may need to be providers of palliative care in areas where specialist providers are active. For example in Kampala the Mbuya Reach Out care project has had its nurses trained in recognising palliative care needs by the local Hospice Africa Uganda, who take referrals and co-manage patients through the provision of pain and symptom control.
Education and training
The education and training of providers at all levels (lay/community, traditional healers, nurses and doctors) is essential to ensure maximum coverage and standards of clinical skills.
However, a lesson from the field is that continuous support and education is required to enable clinicians to practice palliative care skills, as many return to settings where they are the only clinician with an understanding in pain and symptom assessment and management. Adequate resources and support systems are necessary to ensure palliative care skills are sustained.
The provision of simple protocols for multi-level provision in the continuum of HIV care have greatly improved access to palliative care, such as the Hospice Africa Uganda "Blue Book", the Gambian Hands on Care manual, and the WHO "Integrated Management of Adult Adolescent Illness" manual.
The Hands on Care Manual describes the core element of palliation in the continuum of care: "REMEMBER: There is never nothing we can do! We can always give: pain relief and symptom relief, good nursing care, emotional support and spiritual support."
Drug access
Drug access is crucial to high quality and effective pain and symptom management. The experience of demonstration palliative care services to date have been instrumental in promoting safe cheap use: no issues of diversion, abuse or addiction have been documented.
However, services operate in a context of chronic drug shortages and reluctance to prescribe strong opioids according to the WHO pain ladder guidance. Systemic challenges in the supply chain from ordering to administering are compounded by the lack of pharmacists in public health services, and so evaluation and attention to supply issues are crucial.
Data systems
The current paradox presented by palliative care initiatives in Sub-Saharan Africa is that there is a wealth of experience in the field, but a dearth of evidence. The nexus of challenges consists of clinical, logistical, financial, social, political, and research agendas, and it is crucial that clinical and health service audit and research are undertaken to identify how best to deliver palliative care in the resource-poor setting, and to establish an information base relevant to the developing world (Merriman).
Other health care delivery programmes such as TB care have improved significantly through evaluative investment such as operational research and the use of service development frameworks.
Community based health care has been the most common model of care in Africa, and this is also true of palliative care services which have been innovative thereby deliveriing palliative care through existing home based care, through rural roadside clinics and through consultancy to existing main stream secondary care.
However, if community models of palliative care are to be transferable and sustainable they require scrutiny to establish answers to questions such as the community capacity to care, limitations in quality care provision, the level of clinical clinical supervision required, and how best to recruit and retain community volunteers.
Outcome measures relevant and meaningful to the African context need to be developed, as do optimum methods of data collection and robust feasible study designs.
The way forward
There is an overwhelming and increasing need for palliative care in Sub-Saharan Africa, but currently low coverage. However, innovative programmes have demonstrated safe, cheap morphine use and apparently high standards for pain and symptom relief.
To extend this crucial relief of suffering to all those who need it, advocacy for palliative care by funders, policy makers, and health care providers is crucial. The demonstration of success by existing hospices and palliative care teams has been central to supporting advocacy activities to promote and sustain palliative care.
In order to ensure that gains to date are sustained and expanded, funding for service development activities and technical expertise in monitoring, audit and evaluation is critical.
Clinical configurations that provide pain & symptom management and support throughout the HIV disease trajectory, particularly through the use of simple protocol-led palliative care manuals and grafting palliation on to existing home-based HIV care services, have led the way in comparison to developed countries where palliative care has largely been forgotten in the era of antiretroviral therapy.
The full report "Palliative Care in Sub-Saharan Africa: an appraisal" by Dr Richard Harding and Professor Irene J Higginson can be accessed at: http://www.theworkcontinues.org/pressroom/6_3_publications.htm
References
(1) Editorial. The untapped potential of palliative care for AIDS. Lancet 2003; 362(9398):1773.
(2) Harding R, Easterbrook P, Karus D, Raveis VH, Higginson IJ, Marconi K. Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence. Sexually Transmitted Infections. In press.
(3) Sepulveda C, Habiyambere V, Amandua J, Borok M, Kikule E, Mudanga B et al. Quality care at the end of life in Africa. British Medical Journal 2003; 327:209-213.
Further Resources
Advocacy
Joan Marston, Advocacy Officer, Hospice Palliative Care Association of South Africa (HPCA) advocacy@palliative.co.za
Faith Mwangi-Powell, Advocacy Officer Palliative Care, The Diana Princess of Wales Memorial Fund, Faith.Mwangi-Powell@memfund.org.uk,
African palliative care manuals
The Hospice Africa Uganda "Blue Book" is available from educ@hospiceafrica.or.ug, and may be supplied in limited numbers or downloaded from the Diana Princess of Wales Memorial Fund website (above).
The Gambian "Hands on Care " manual may be available from gschneider@gamtel.gm
The WHO IMAAI manual is available from the WHO website