Uganda: Current Status of Palliative Care

252 Journal of Pain and Symptom Management Vol. 24 No. 2 August 2002 Uganda: Current Status of Palliative Care Anne Merriman, MBE, FRCP Hospice Uganda, Kampala, Uganda Introduction Palliative care was first introduced to Uganda in 1993 with the start of Hospice Uganda (HU). At that time, there was already supportive care for HIV/AIDS patients with home care from TASO (the AIDS Support organization) and many other home care programs. These organizations supported clients and their families with mainly counseling; they encouraged living positively with HIV. TASO in particular made a huge impact on attitudes to HIV/AIDS in the country and to education towards prevention of the disease. This is now having positive effects, with a reduction in the infection rates among pregnant women in several centers in the country. Recently, palliative care has been attracting funds. Like many other countries, Uganda s AIDS support organizations are now described as having palliative care, yet they do not have the modern methods of pain and symptom control introduced through the modern hospice movement by Dame Cicely Saunders, and researched since 1967. Nurses are the backbone of palliative care. The emphasis on counseling by donor agencies, with provision of salaries higher than for nurses, has taken nurses from their profession to become counselors. Counselors are frustrated when faced with a patient in severe pain and neither the patient nor family can be counseled due to their distress from the pain. Uganda is now trying to address this problem and the great need for palliative care in HIV/AIDS and/or cancer by grafting pain and Address reprint requests to: Anne Merriman, MBE, FRCP, Hospice Uganda, P.O. Box 7757, Kampala, Uganda. symptom control onto already existing support organizations. Palliative care is also being introduced throughout the existing health systems in the country, with support from the Ministry of Health, using HU as their technical experts. Palliative care is now part of essential clinical services for HIV/AIDS patients in the five-year Strategic health Plan from 2000 2005. 1 Meanwhile in 1998, Mildmay International opened a center of excellence in collaboration with the Ministry of Health, under the patronage of the President himself. This center was to manage patients in their clinics and train health professionals not only from Uganda but also from other African countries. Their care includes clinical care for adults and children, VCT, rehabilitation, childcare and day care for HIV-infected children and palliative care. ART (anti- retroviral therapy) is given and the parallel monitoring tests are in place. Their care for HIV/AIDS now includes pain and symptom control using the modern methods for patients who can travel to the center. Patients who cannot reach the center are referred to hospitals or to HU for home care. Epidemiology of Pain in Cancer and/or AIDS The estimated population of Uganda (Fig. 1) is now 22 million. The incidence of HIV/ AIDS has decreased from 30% in the early 1990 s to 6% of the population in 2002. This reduction is considered to be due to a number of factors: 1. The acknowledgment of the disease in Uganda by President Museveni early on in the epidemic, bringing in aid for VCT and prevention. U.S. Cancer Pain Relief Committee, 2002 0885-3924/02/$ see front matter Published by Elsevier, New York, New York PII S0885-3924(02)00447-5

Vol. 24 No. 2 August 2002 Uganda 253 Fig. 1. Tourist map of Uganda 2002, with places mentioned in text in boxes. 2. The positive attitude towards HIV/AIDS due to organizations, such as TASO, which have encouraged people to be open about their status and to advise others in their age cohort and communities on how to avoid the disease. 3. The publicity given in schools and in the media to the use of prevention and abstinence. 4. Special programs through Churches Youth Alive involving youth in supporting each other in abstinence. However, the epidemic of death is still with us. The infective rate is down but many are still dying of HIV/AIDS and related cancers. It was estimated that 0.1% of the population were suffering from cancer before the onset of the HIV epidemic. Overall, 40 60% of all cancers attending hospice and registered with the Cancer Registry of Uganda are HIV-related, so this estimate is probably now too low. Using 0.1%, it is estimated that there are 22,000 new cancer cases each year. Twenty-five percent of cancers presenting to HU are epidemic Kaposi s sarcoma. A further 25 % are estimated to be HIV-associated, from the course of the disease. This in itself brings up the incidence of cancer countrywide. All patients with cancer attending HU are in pain. One percent of the population is suffering at any one time from AIDS pain. This gives us an estimate that 240,000 are presently in pain in Uganda on a daily basis. However, when looking at pain and symptom control, pain is compounded in the patient suffering from Stage 4 AIDS and cancer.

254 Merriman Vol. 24 No. 2 August 2002 Although pain in AIDS may be temporary if the opportunistic infection is controlled, pain recurs and needs constant monitoring. The commonest severe pains seen at HU in HIV/ AIDS are cryptococcal meningitis, esophageal ulceration, herpes simplex, herpes zoster, and peripheral neuropathies. Bringing Palliative Care to the Poorest In Uganda, 57% of people never see a health worker. They too suffer from cancer and HIV/ AIDS. How do we reach them so that the human right of a being free from pain can be brought to them? These patients attend traditional healers or just stay at home with a few over-the-counter drugs when they can afford them. HU is now extending its services to try and meet the needs of such patients, using volunteers in the villages to report those in pain or those with uncontrollable symptoms, and having a home care team equipped with skills and drugs to control the conditions. We do this countrywide by situation analyses followed by action. This is now underway. Dr. Ekie Kikule, Deputy Medical Director of HU and the research coordinator, has now performed three situational analyses. 2 4 One was part of her Master s thesis in Public Health and looked at the needs of palliative care patients and their carers in the Kampala area. The second was carried out in Hoima, a poorer District, where Little Hospice Hoima (LHH) is carrying palliative care to a smaller number of people suffering from cancer and/or HIV. This analysis can be used as a model for other poorer African countries. This is now completed and the work of LHH is being reviewed to incorporate the use of volunteers in the villages, who will identify and refer those in pain who need palliative care. The team will then visit the patient and be prepared to diagnose clinically, manage pain and symptoms, and provide holistic care for the patient, unless further referral will improve the quality of life and is affordable and acceptable to the family. This has now commenced in Hoima District with training of volunteers, with one volunteer for ten houses. They will be using the community volunteers already in place and the people most acceptable to the families, such as traditional healers and Traditional Birth Attendants (TBAs). Barriers to Effective Palliative Care There are numerous barriers to expanding palliative care in Uganda. There is lack of knowledge of end-of-life care and critical care among health professionals. This has been addressed since 1993. Almost 1000 health professionals have attended a week-long course in hospice and palliative care for cancer and/or AIDS, applied to the African context. Several participants have followed up five cases and submitted write-ups as part of examination to become palliative care practitioners. Mildmay also have ongoing training programs covering all aspects of support and palliative care from diagnoses in HIV/AIDS. Eight hundred non-health professionals have attended 24 teaching hours in palliative care, either at Hospice or in their own Districts. This in a very popular course training carers and volunteers in the management of a patient within the home. These courses are now being carried out in the vernacular at village level for those volunteers described above. Undergraduate doctors at both universities (Makerere and MUST) are receiving palliative care training as part of the undergraduate curriculum. Palliative care is also part of the specialist MMed degree curriculum in Mbarara University of Science and Technology (MUST). Undergraduate pharmacists and BSNs are also taught palliative medicine, and student nurses at the Government Referral hospital are trained both in didactic and experience with hospice. Finally, updates (CME) in palliative care are held quarterly and a publication twice a year is circulated to members of the Palliative Care Association of Uganda. Following sensitization of District Leaders and training of key practitioners in each District, teams are going to each District. The teams consist of a member from MoH and two palliative care practitioners. They are working with the key practitioners with patients in diagnosis and management of pain. They also are facilitating these key professionals to become trainers in their own District (see below). TASO also continues their training programs mainly in counselling and supportive care. Lack of availability of drugs for pain and symptom control is another major barrier to care. A short list of drugs for palliative care has been submitted for inclusion in the national

Vol. 24 No. 2 August 2002 Uganda 255 Essential Drug List. These must continue to be affordable and available. Morphine has been available in oral liquid form since 1993, but has not been requested in health centers, except Hospice and Mildmay, because of previous unfounded fears regarding addiction and health professionals being labeled addicts if they prescribe morphine. This has now been addressed and morphine is being introduced to 57 Districts in conjunction with the Ministry of Health. The morphine is being provided free to the Districts. Fifteen Districts have been covered in the last three months with a grant from the World Health Organization, with Italian cooperation. We are now seeking further funding for the remaining 43 Districts. There is need for an essential drug list in palliative care medications to be kept up to date in each district through the MoH channels. This is being discussed. Opposition to palliative care from senior consultants is another barrier. These physicians are convinced that palliative care will accelerate death. This has been a problem in each country (in Asia and Africa) where the author has introduced palliative care. A recent conference was held to illuminate the problems and to answer some of these concerns. The Minister of Health attended and promised to encourage the use of morphine. An insufficient number of health professionals are allowed to prescribe morphine (a Class A drug). Presently, only doctors, dentists and veterinary surgeons are allowed to prescribe. There is only one doctor for 19,000 people, which leaves each doctor to prescribe for 213 patients in severe pain! To address this barrier, the statute that allows the midwife to prescribe pethidine (meperidine) for labor is being revisited to allow Palliative Care Nurse Specialists (PCNS) and Clinical Officers with palliative care training to prescribe morphine. These PCNSs are trained for nine months by HU, with rotation into other palliative care settings. On completion, the PCNS is registered with the Nursing Council of Uganda. The Minister of Health will table this in Parliament later this year. It is planned to have at least one PCNS in each District and each District referral hospital. This nurse will be seen as a leader of a team and a trainer of other health professionals. Future Developments in Palliative Care Working together with the Ministry of Health, standards for palliative care will be set and support will be provided to the organizations already meeting palliative care needs, i.e., TASO, HU, Mildmay and home care programs. This will involve coordination of services and networking in each District. The present programs, which exist to maintain palliative care standards, will continue and be audited. Training programs are being intensified, with follow up and clinical assessments in the places of work. A distance learning Diploma in Palliative Care for Africa began in April 2002 from HU, in conjunction with Makerere University. This is different than the diplomas from South Africa, Nairobi and other countries, which are affiliated with Western universities. The African Diploma is based on African experiences and is prepared by African teachers or those with African experience in palliative care. Twenty participants are now registered from Uganda, Tanzania, Malawi, Ethiopia, and Zimbabwe. A resource center of materials for palliative care in Africa is being commenced at HU, with e-mail links and websites. The main players in palliative care in Uganda will continue to be a model for other African countries and encourage initiation or coordination of pain and symptom control in those countries with increasing HIV/AIDS and associated cancers. Summary The last two years have seen a tremendous expansion of palliative care in Uganda. This has been spearheaded by the Ministry of Health initiative to bring palliative care to the forefront as an essential clinical service for Uganda. Clinical services and training of health professionals and village volunteers must go side by side according to the needs identified in situational analyses. Acknowledgments The author would like to acknowledge the members of the wonderful hospice team at HU, who have grown up alongside her in the knowledge of palliative care suitable to the Ugandan culture.

256 Merriman Vol. 24 No. 2 August 2002 References 1. Republic of Uganda, Ministry of Health: Health Sector Strategic Plan 2000/01 2004/05. 2. Kikule E. A study to assess the palliative care needs of terminally ill persons and their caregivers in Kampala District, Uganda 2001. Dissertation for Master s Degree in Public Health, Makerere University. 3. Kikule EMN. A needs assessment for palliative care services in rural settings. A case for Hoima District in Uganda. 2001. 4. Kikule EMN. A needs assessment for palliative care services in rural settings. A case for Tororo District in Uganda. 2002.