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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 Ugandain 1993 with the start of Hospice Uganda (HU).At that time, there was already supportive carefor HIV/AIDS patients with home care fromTASO (the AIDS Support organization) andmany other home care programs. These orga-nizations supported “clients” and their familieswith mainly counseling; they encouraged livingpositively with HIV. TASO in particular made ahuge impact on attitudes to HIV/AIDS in thecountry and to education towards preventionof the disease. This is now having positive ef-fects, with a reduction in the infection ratesamong pregnant women in several centers inthe country.

Recently, palliative care has been attractingfunds. Like many other countries, Uganda’sAIDS support organizations are now describedas having palliative care, yet they do not havethe modern methods of pain and symptomcontrol introduced through the modern hos-pice movement by Dame Cicely Saunders, andresearched since 1967. Nurses are the back-bone of palliative care. The emphasis on coun-seling by donor agencies, with provision of sal-aries higher than for nurses, has taken nursesfrom their profession to become counselors.Counselors are frustrated when faced with apatient in severe pain and neither the patientnor family can be counseled due to their dis-tress from the pain.

Uganda is now trying to address this prob-lem and the great need for palliative care inHIV/AIDS and/or cancer by grafting pain and

symptom control onto already existing supportorganizations. Palliative care is also being in-troduced throughout the existing health sys-tems in the country, with support from theMinistry of Health, using HU as their technicalexperts. Palliative care is now part of essentialclinical services for HIV/AIDS patients in thefive-year Strategic health Plan from 2000–2005.

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Meanwhile in 1998, Mildmay Internationalopened a center of excellence in collaborationwith the Ministry of Health, under the patron-age of the President himself. This center was tomanage patients in their clinics and trainhealth professionals not only from Uganda butalso from other African countries. Their careincludes clinical care for adults and children,VCT, rehabilitation, childcare and day care forHIV-infected children and palliative care. ART(anti- retroviral therapy) is given and the paral-lel monitoring tests are in place. Their care forHIV/AIDS now includes pain and symptomcontrol using the modern methods for patientswho can travel to the center. Patients who can-not reach the center are referred to hospitalsor to HU for home care.

Epidemiology of Pain in Cancerand/or AIDS

The estimated population of Uganda (Fig. 1)is now 22 million. The incidence of HIV/AIDS has decreased from 30% in the early1990’s to 6% of the population in 2002. Thisreduction is considered to be due to a num-ber of factors:

1. The acknowledgment of the disease inUganda by President Museveni early onin the epidemic, bringing in aid for VCTand prevention.

Address reprint requests to:

Anne Merriman, MBE,FRCP, Hospice Uganda, P.O. Box 7757, Kampala,Uganda.

Vol. 24 No. 2 August 2002 Uganda 253

2. The positive attitude towards HIV/AIDSdue to organizations, such as TASO,which have encouraged people to beopen about their status and to advise oth-ers in their age cohort and communitieson how to avoid the disease.

3. The publicity given in schools and in themedia to the use of prevention and absti-nence.

4. Special programs through Churches “YouthAlive” involving youth in supporting eachother in abstinence.

However, the epidemic of death is still with us.The infective rate is down but many are still dy-ing of HIV/AIDS and related cancers. It was esti-mated that 0.1% of the population were suffer-ing from cancer before the onset of the HIV

epidemic. Overall, 40–60% of all cancers attend-ing hospice and registered with the Cancer Reg-istry of Uganda are HIV-related, so this estimateis probably now too low. Using 0.1%, it is esti-mated that there are 22,000 new cancer caseseach year. Twenty-five percent of cancers pre-senting to HU are epidemic Kaposi’s sarcoma. Afurther 25 % are estimated to be HIV-associated,from the course of the disease. This in itselfbrings up the incidence of cancer countrywide.

All patients with cancer attending HU are inpain. One percent of the population is suffer-ing at any one time from AIDS pain. This givesus an estimate that 240,000 are presently inpain in Uganda on a daily basis.

However, when looking at pain and symp-tom control, pain is compounded in the pa-tient suffering from Stage 4 AIDS and cancer.

Fig. 1. Tourist map of Uganda 2002, with places mentioned in text in boxes.

254 Merriman Vol. 24 No. 2 August 2002

Although pain in AIDS may be temporary ifthe opportunistic infection is controlled, painrecurs and needs constant monitoring. Thecommonest severe pains seen at HU in HIV/AIDS are cryptococcal meningitis, esophagealulceration, herpes simplex, herpes zoster, andperipheral neuropathies.

Bringing Palliative Care to the Poorest

In Uganda, 57% of people never see a healthworker. They too suffer from cancer and HIV/AIDS. How do we reach them so that the hu-man right of a being free from pain can bebrought to them?

These patients attend traditional healers or juststay at home with a few over-the-counter drugswhen they can afford them. HU is now extendingits services to try and meet the needs of such pa-tients, using volunteers in the villages to reportthose in pain or those with uncontrollable symp-toms, and having a home care team equippedwith skills and drugs to control the conditions.We do this countrywide by situation analyses fol-lowed by action. This is now underway.

Dr. Ekie Kikule, Deputy Medical Director ofHU and the research coordinator, has nowperformed three situational analyses.

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Onewas part of her Master’s thesis in Public Healthand looked at the needs of palliative care pa-tients and their carers in the Kampala area.The second was carried out in Hoima, a poorerDistrict, where Little Hospice Hoima (LHH) iscarrying palliative care to a smaller number ofpeople suffering from cancer and/or HIV.This analysis can be used as a model for otherpoorer African countries.

This is now completed and the work of LHHis being reviewed to incorporate the use of vol-unteers in the villages, who will identify and referthose in pain who need palliative care. The teamwill then visit the patient and be prepared to di-agnose clinically, manage pain and symptoms,and provide holistic care for the patient, unlessfurther referral will improve the quality of lifeand is affordable and acceptable to the family.

This has now commenced in Hoima Districtwith training of volunteers, with one volunteerfor ten houses. They will be using the communityvolunteers already in place and the people mostacceptable to the families, such as traditionalhealers and Traditional Birth Attendants (TBAs).

Barriers to Effective Palliative Care

There are numerous barriers to expandingpalliative care in Uganda. There is lack of knowl-edge of end-of-life care and critical care amonghealth professionals. This has been addressedsince 1993. Almost 1000 health professionalshave attended a week-long course in hospiceand palliative care for cancer and/or AIDS, ap-plied to the African context. Several partici-pants have followed up five cases and submit-ted write-ups as part of examination to becomepalliative care practitioners. Mildmay also haveongoing training programs covering all aspectsof support and palliative care from diagnosesin HIV/AIDS.

Eight hundred non-health professionals haveattended 24 teaching hours in palliative care,either at Hospice or in their own Districts. Thisin a very popular course training carers andvolunteers in the management of a patientwithin the home. These courses are now beingcarried out in the vernacular at village level forthose volunteers described above.

Undergraduate doctors at both universities(Makerere and MUST) are receiving palliativecare training as part of the undergraduate cur-riculum. Palliative care is also part of the spe-cialist MMed degree curriculum in MbararaUniversity of Science and Technology (MUST).Undergraduate pharmacists and BSNs are alsotaught palliative medicine, and student nursesat the Government Referral hospital aretrained both in didactic and experience withhospice. Finally, updates (CME) in palliativecare are held quarterly and a publication twicea year is circulated to members of the PalliativeCare Association of Uganda.

Following sensitization of District Leadersand training of key practitioners in each Dis-trict, teams are going to each District. Theteams consist of a member from MoH and twopalliative care practitioners. They are workingwith the key practitioners with patients in diag-nosis and management of pain. They also arefacilitating these key professionals to becometrainers in their own District (see below).TASO also continues their training programsmainly in counselling and supportive care.

Lack of availability of drugs for pain andsymptom control is another major barrier tocare. A short list of drugs for palliative care hasbeen submitted for inclusion in the national

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Essential Drug List. These must continue to beaffordable and available. Morphine has beenavailable in oral liquid form since 1993, but hasnot been requested in health centers, exceptHospice and Mildmay, because of previous un-founded fears regarding addiction and healthprofessionals being labeled addicts if they pre-scribe morphine. This has now been addressedand morphine is being introduced to 57 Dis-tricts in conjunction with the Ministry ofHealth. The morphine is being provided freeto the Districts. Fifteen Districts have been cov-ered in the last three months with a grant fromthe World Health Organization, with Italiancooperation. We are now seeking further fund-ing for the remaining 43 Districts. There isneed for an essential drug list in palliative caremedications to be kept up to date in each dis-trict through the MoH channels. This is beingdiscussed.

Opposition to palliative care from seniorconsultants is another barrier. These physi-cians are convinced that palliative care will ac-celerate death. This has been a problem ineach country (in Asia and Africa) where theauthor has introduced palliative care. A recentconference was held to illuminate the prob-lems and to answer some of these concerns.The Minister of Health attended and promisedto encourage the use of morphine. An insuffi-cient number of health professionals are al-lowed to prescribe morphine (a Class A drug).Presently, only doctors, dentists and veterinarysurgeons are allowed to prescribe. There isonly one doctor for 19,000 people, whichleaves each doctor to prescribe for 213 patientsin severe pain! To address this barrier, the stat-ute that allows the midwife to prescribe pethi-dine (meperidine) for labor is being revisitedto allow Palliative Care Nurse Specialists(PCNS) and Clinical Officers with palliativecare training to prescribe morphine. ThesePCNSs are trained for nine months by HU,with rotation into other palliative care settings.On completion, the PCNS is registered withthe Nursing Council of Uganda. The Ministerof Health will table this in Parliament later thisyear. It is planned to have at least one PCNS ineach District and each District referral hospi-tal. This nurse will be seen as a leader of a teamand 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 sup-port will be provided to the organizations al-ready meeting palliative care needs, i.e., TASO,HU, Mildmay and home care programs. Thiswill involve coordination of services and net-working in each District. The present pro-grams, which exist to maintain palliative carestandards, will continue and be audited. Train-ing programs are being intensified, with followup and clinical assessments in the places ofwork. A distance learning Diploma in PalliativeCare for Africa began in April 2002 from HU,in conjunction with Makerere University. Thisis different than the diplomas from South Af-rica, Nairobi and other countries, which are af-filiated with Western universities. The AfricanDiploma is based on African experiences and isprepared by African teachers or those with Af-rican experience in palliative care. Twenty par-ticipants are now registered from Uganda,Tanzania, Malawi, Ethiopia, and Zimbabwe.

A resource center of materials for palliativecare in Africa is being commenced at HU, withe-mail links and websites. The main players inpalliative care in Uganda will continue to be amodel for other African countries and encour-age initiation or coordination of pain andsymptom control in those countries with in-creasing HIV/AIDS and associated cancers.

Summary

The last two years have seen a tremendous ex-pansion of palliative care in Uganda. This hasbeen spearheaded by the Ministry of Health ini-tiative to bring palliative care to the forefront asan essential clinical service for Uganda. Clinicalservices and training of health professionals andvillage volunteers must go side by side accordingto the needs identified in situational analyses.

Acknowledgments

The author would like to acknowledge themembers of the wonderful hospice team atHU, who have grown up alongside her in theknowledge of palliative care suitable to theUgandan culture.

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References

1. Republic of Uganda, Ministry of Health: HealthSector Strategic Plan 2000/01–2004/05.

2. Kikule E. A study to assess the palliative care needsof terminally ill persons and their caregivers in Kam-pala District, Uganda 2001. Dissertation for Master’sDegree in Public Health, Makerere University.

3. Kikule EMN. A needs assessment for palliativecare services in rural settings. A case for Hoima Dis-trict in Uganda. 2001.

4. Kikule EMN. A needs assessment for palliativecare services in rural settings. A case for Tororo Dis-trict in Uganda. 2002.