Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Hospice Uganda—A Model Palliative Care Initiative in Africa

An Interview with Anne Merriman, FRCP (I), FRCP (Edin), MCommH

Over the past 20 years, HIV (human immunodeficiency virus) has spread rapidly throughout subSaharan Africa. In the early 1990s, Uganda, a country of 22 million people, had a 30 percent incidence of HIV, then the highest in the region. Now, however, as a result of a government-led nationwide education and prevention campaign, Uganda is the only nation in sub-Saharan Africa that has seen a drop in incidence of HIV infection, to its current level of 9 percent. Moreover, Uganda’s efforts to provide palliative care to the hundreds of thousands of people now dying from AIDS make it a model for other developing countries.¹ Jack G.M. Jagwe, FRCP, recently summarized the policy changes brought about by the introduction of palliative care into Uganda nine years ago, through the leadership of Dr. Anne Merriman and her colleagues at Hospice Uganda, and now solidified through the adoption of palliative care objectives by the Ugandan Ministry of Health.² Furthermore, the Ugandan government is in the midst of implementing plans for broad accessibility of oral morphine and a regulatory change that would allow palliative care specialist nurses to prescribe morphine

In the following interview with Associate Editor Karen S. Heller, PhD, Dr. Merriman describes the challenges to providing palliative care in Uganda and the strategies she and her colleagues have developed to overcome them..[Citation: Merriman A, Heller KS. Hospice Uganda--A model palliative care initiative in Africa: An interview with Anne Merriman. Innovations in End-of-Life Care. 2002;4(3), www.edc.org/lastacts]

History and Epidemiology of AIDS in Uganda

Map of Uganda

Please tell us about the history and epidemiology of HIV and AIDS in Uganda.

The first case of AIDS was recognized in 1982 in the Rakai district on Lake Victoria. By 1990-92, HIV had spread to all of Uganda's 57 districts and by 1993, incidence of HIV infection reached its peak at 30 percent. The routes of transmission have been through heterosexual sex (75-80 percent); from mother-to-child, in utero or through breast milk (15-25 percent); and from blood and blood products (2-4 percent).⁴ The majority of those infected are between the ages of 15-40 years, in the prime of their working and reproductive lives. More than half of all those infected are women.

Proactive Governmental Response

In 1988, President Yoweri Kaguta Museveni recognized HIV as a problem and brought both people and funds into the country to address it through an education, prevention, and publicity campaign. The campaign focused on preventing transmission through sex education and encouraging the use of condoms. The education took place in schools and churches, and the campaign was publicized through posters put up all over the country, and through the radio and television media. This effort, supported by the Ministry of Health, went right down to the village and community level. Families were encouraged to open up and talk to children about the disease. People with HIV began to come forward and declare that they were positive, and talk about living with HIV. This openness got a boost when Philly Lutaaya, a very famous Ugandan popular singer, declared on video that he had HIV and wrote songs about it; his efforts really increased public awareness of the disease and got people moving in the direction of change.

The education and prevention efforts put in place and the publicity about the epidemic were important factors in bringing about a precipitous drop in incidence of HIV. For example, based on HIV testing of women attending maternity clinics throughout the country, the Ministry of Health now estimates the incidence among women to be 6-8 percent, down from 30 percent in 1993.⁵ This is significant, because women make up more than half the people infected with HIV and mother to child transmission is responsible for almost all of the HIV infection in infants and children. We are the first country in Africa to show a decline in the epidemic.

Although Uganda had the highest incidence of HIV in Africa for about five years, other countries now have much higher rates and are trying to cope with an increasing epidemic. In Kenya and Tanzania, the incidence rates are already higher than in Uganda, and are still increasing. In Zimbabwe, Zambia and South Africa, the incidence of HIV is 20-30 percent in women seen in antenatal clinics, whereas Botswana is approaching 45 percent incidence.⁶ Uganda is really far ahead of other African countries in dealing with the epidemic, and is providing a model for them. Health workers in other countries are coming here to see what this country has done to make such an improvement.

HIV Prevalence

The prevalence of HIV in the Ugandan population of 22 million people is about 10 percent.⁷ Currently, 1.44 million people are living with HIV, and 900,000 people have already died of the disease.⁸ The vast majority of Ugandans with HIV are adults. It is difficult to know the number of children with HIV, because so many children die without being tested. Ninety percent of infected children get HIV through mother-to-child transmission, and the mean age of diagnosis of children is 2.3 years. However, the children who get to a pediatric unit where their disease might be diagnosed are actually quite few. In 2001,the cumulative number of children who died of AIDS, as determined by clinical criteria, was 4,286. The total number of children dying of HIV disease, however, may well be higher.

Since the start of the HIV epidemic, we have seen an estimated 50 percent increase in cancers, based on our own hospice records and the experience of the Uganda Cancer Institute. We estimate that approximately one quarter of all cancers now are Kaposi's sarcoma and one-fifth are cancers of the cervix, both associated with HIV infection. It is difficult to get a true picture of HIV or cancer prevalence, however, in a country where death certificates are not mandatory and more than half the population does not access health care.

HIV Still Carries a Stigma

You have to take all these figures with a pinch of salt, as it is very difficult to test people for HIV because of the stigma that still attaches to the disease. Not many people want to declare that they have HIV. The higher you are on the social ladder, the more stigma there is. People are willing to die of TB, meningitis, or pneumonia—anything but AIDS; thus, a death from AIDS may not recorded that way very often even when it is the cause.

There is greater effort being made in communities to increase understanding of HIV and reduce the stigma associated with the disease. Several support organizations, including The AIDS Support Organization (TASO), which was started at a grassroots level in this country and is well known here, are encouraging those infected with HIV not to hide their status. But there are still pockets of stigma here in Uganda, and I understand that inside the villages, it can be quite high. As we have been going into other countries to try to help them, we have found that the stigma surrounding HIV is a greater problem there, as well. It’s very obvious in Ethiopia and Malawi, for example.

Mortality from AIDS now at a peak

Although the incidence of HIV is going down in Uganda, deaths from AIDS now seem to be at the peak. It takes seven to fifteen years for an HIV-infected person who does not get anti-retroviral treatment to progress to full AIDS. So, many of those who were infected with HIV in the early 1990s are now dying. The most common cause of absenteeism from work now is attending funerals.

Without HIV, the life expectancy at birth in Uganda is 54 years; with HIV, it’s been estimated at 39 years.⁹ Seventy percent of those affected are in the economically active age groups, so HIV has severely reduced the work force. This situation has profoundly disrupted families, the economy, and society as a whole.

Of the deaths that we see at Hospice Uganda, and from what we know of other recorded deaths, the majority of those dying are people between the ages of 30-39 years. These young adults have left behind two million orphans, the highest recorded number of AIDS orphans in Africa. This has meant a great deal of suffering for these children, and for the grandmothers and other relatives who have taken over much of the orphan care. We don’t encourage orphanages, in this country, because most children are looked after within the community very well with some financial support for the carers for school fees, and forth.¹⁰ However, some communities are beginning to feel economic problems because moneys are not filtering down to those in need.

Burdens of caring for 2 million orphans

We have very big families here, with many children. Fifty percent of the Ugandan population is under 15 years of age. Although there aren't large numbers of elderly people to look after the orphans, in the absence of a grandparent, the extended community family usually takes them on. But these relatives have great difficulty in feeding the children and in paying school fees for them. Even though primary universal education was an election manifesto for the President of Uganda during his last election, and he's tried to make good on that promise, the public schools are so poor that you get up to 50-60 children in a class, some with no blackboards and no desks; they're writing on the sand. The Ministry of Education funds about 40 percent of primary schools and has some in every district, with plans to cover all primary education, as well as to increase the number of secondary and technical education slots in the districts. Although education is free in government schools, the community is expected to contribute to buildings, furnishings and so forth. To support these schools, parents must pay fees. So, although nearly every child is going to school at the moment, the quality of the school may be quite low in many of the villages. So, the financial, emotional, and practical burdens of caring for AIDS orphans on surviving adult family members are very great.

Access to Treatment

Do people in Uganda have access to anti-retroviral drugs and treatments for opportunistic infections and cancers associated with HIV?

All access to treatment is really controlled by the financial ability of the patient to pay. Uganda is a very poor country, where the annual income per capita is around $300 and 35 percent of the population earn less than $1.00 per day.¹¹ The treatment for opportunistic diseases associated with HIV infection is too expensive for most people, so even when treatment is available (for example, amphotericin for cryptococcal meningitis), most people will die without treatment because they can't afford to pay for it. Less than 5 percent of cancer patients get radiotherapy or chemotherapy, usually too late to benefit from it. So, anti-retrovirals for HIV are available if you can pay for them, but only 0.5 percent of people with HIV obtain anti-retroviral treatment. What that means is that of the 1.44 million people currently living with HIV, only 7,200 people have access to anti-retrovirals. At present, many American donors are bringing in anti-retroviral drugs and health professionals are being given special training to use them. The monthly cost of these drugs is now $41 per person (in US dollars), which puts them out of reach of most of the population.

To put this in perspective, consider that the amount of money required to provide medical care for every person in the country is $12 per person per year.¹² The Ugandan government and private donors contribute $3.95 per person per year, and the patients have to come up with the rest. To treat one episode of malaria costs $4, so you can see that this is a very difficult situation. The burden on patients of paying for care is among the reasons why 57 percent of Ugandans do not access medical treatment other than from local traditional healers.

Another factor in this is that in Uganda, there is one doctor for approximately 19,000 people.¹³ But the distribution of doctors is very unequal. Half the doctors in the country work in Kampala, the capital city. In the districts outside the capital, the ratio is one doctor to 50,000 people. So, when you think of all the other diseases from which people suffer in this country—AIDS is within the top five, but malaria is still number one—the doctors just can't cope with the number of people who need care.

Need for Pain Management and Palliative Care

Ninety-eight percent of patients coming to our hospice have pain. Cancer pain is much scarier than pain from HIV/AIDS because both the patient and the health worker know that it will not go away and may only get worse, whereas most pain associated with HIV/AIDS goes away with management of the opportunistic infection giving rise to it, although it may recur. Sadly, because many HIV-infected people in Uganda cannot afford treatment for opportunistic infections, they may be terminally ill and in severe pain when we see them.

Currently, it is estimated that 25-50 percent of patients with full-blown AIDS suffer severe pain and require pain control medications.¹⁴ Only physicians are currently allowed to prescribe morphine. However, because of the shortage of physicians, the Ministry of Health is in the process of changing the statute in law to allow palliative care nurse specialists to prescribe morphine and other pain medications.

The Ministry of Health is already making morphine available throughout the whole country, free of charge. Morphine is very inexpensive here, in any case. At Hospice Uganda, we can get morphine for less than one-thousandth of a dollar per milligram, because we buy it in powder form and make it up ourselves. Morphine is compounded this way in only two places: at our hospice and at the Joint Medical Stores, a nonprofit procurement and quality control organization originally started by the Catholic Medical Board and the Protestant Medical Bureau for Mission Hospitals. Morphine tablets manufactured by drug companies cost much more, and only a couple of hospitals have requested them from Joint Medical Stores.

Through Hospice Uganda, we are working to make treatment available to people for pain and symptom control. We never refuse a patient if they cannot pay. People can get hospice care from us directly if they live within a 20 km. radius of the hospice, and we reach many more through our training of health care workers in other districts of the country.

At the moment we are working with the Ministry of Health to bring morphine to the districts, in parallel with our training to educate and sensitize health care professionals, community leaders, and narcotic control police to the benefits of morphine, and train health care providers in its use. With funding from the World Health Organization (WHO), we have carried out training on pain management, including the use of morphine, in 15 Ugandan districts so far. We have not yet got the funding to extend this training to the remaining 42 districts.

Origins of Hospice Africa and Hospice Uganda

How did you come to start a hospice in Uganda?

Before I came to Uganda, I worked as the medical director of Nairobi Hospice in Kenya, which was only the second hospice in the whole of sub-Saharan Africa (excluding South Africa). It serves primarily cancer and AIDS patients. The first hospice was in Zimbabwe and it was started by the whites for the whites and had a different approach. Although the hospice in Nairobi was started by an English lady named Ruth Woolridge, in fact, it was African-based and set up to meet the needs of the Africans. While I was there, I wrote an article describing what we were doing in Nairobi for Contact, a Christian journal that focused on hospice care and was edited by Dame Cicely Saunders.¹⁵

After publication of that article, I received several letters from people in different African countries asking me to help them do what we had done in Nairobi. I realized that there was a terrific need for what we were doing. I wanted to provide a hospice that was suitable to the African needs, affordable for the people, and acceptable culturally, and that would be a model for other countries. Hospice Africa was conceived to meet those goals, through supporting and providing care through a model hospice and palliative care training program in an African country, which would, in turn, inspire and encourage palliative care efforts throughout the African continent.

When we started, our objectives were, first, to provide the needed palliative care services. Second, we aimed to provide training for health professionals at both undergraduate and post-graduate levels, so that hospice and palliative care knowledge and skill could spread throughout the health care professions and throughout the country in which we would locate our hospice. Our third goal was to be a model for other African countries to emulate.

Before deciding to locate the hospice in Uganda, we did a feasibility study in a couple of countries that had asked for our help. We had already done a feasibility study in Kenya, but Nairobi Hospice was not anxious for us to set up another model there. So, we went to countries where we had support from the Ministry of Health, first to Nigeria, where a group was very eager to start a hospice, and then to Uganda, where the need was so great and there also was a lot of support from government and community organizations. The difference between these two countries, from our perspective, was that in Nigeria, communication was dreadful, and because of widespread corruption there, it did not have the faith of donor countries. In Uganda, on the other hand, people had faith in the government and the corruption wasn't very high. So, we decided to locate our model hospice in Kampala, Uganda.

Obtaining Financial and Other Support

Before I actually started the hospice, however, I went to the United Kingdom (UK) for a little over a year to try to raise financial support with which to begin work in Uganda. In the UK, we registered in 1993 as Hospice Africa UK, a charity organization made up of friends of mine, whose mission was to raise funds for the hospice. This group was to support us financially and in many other ways. I was joined in the UK by Nurse Fazal Mbaraka, a Kenyan-Asian who had worked with me in Nairobi Hospice. Nurse Fazal was already a very good palliative care nurse, and after some more training in the UK, she came to Uganda and worked with me on the feasibility study. Unfortunately, before we actually started Hospice Uganda, her father was murdered in Kenya, and she had to return home. Although she did not return to Uganda, I mention her because she was the first nurse to join our effort.

As part of my initial fund-raising efforts, I traveled to the United States, Canada, Singapore, and all over the UK, trying to drum up support for what I was trying to do. I found that people don't want to support an idea, they want to support work that's already on the ground. At the time, in 1992-93, the United States and Canada were focusing on preventing AIDS in their own countries and elsewhere, but they were not putting a lot of money into treating or managing AIDS outside their own borders. So, if I had wanted condoms, I could have got millions, but because I was looking for money to care for infected people, there was no help. The main financing I got at that time was $30,000 from my church in Singapore, because they'd seen what I did, in setting up palliative care services there a number of years ago.

When we started the hospice in Kampala, Uganda on September 23, 1993, we had only enough money to pay for three months' running costs, and to employ a driver and a Ugandan nurse. We had nowhere to stay, so at first one of the mission hospitals loaned us some rooms, and then, Henry Kateregga, a Ugandan businessman, loaned us his house, rent-free, in an industrial area of Kampala. We lived there for nine months until Ireland Aid bought and renovated a house for us; that's where the main hospice is located at the moment. The British Health High Commission in Kampala gave us a 10-year-old Land Rover, which has enabled us to do home care within a 20 km radius of Kampala. We still have that Land Rover with us now; it has a kind of sentimental value.

In 1998, we opened two branches of the hospice. Mobile Hospice Mbarara extends our care to people in Mbarara and the surrounding districts in the southwest of the country, and provides teaching for students at the medical school in that town. Little Hospice Hoima was opened in a very poor, rural district in the northwest part of the country, where 1 in 4 people are HIV positive. The Hoima hospice serves as a model for other African countries seeking ways to provide palliative care to people in remote areas with very few resources.

Staffing

We started off with three staff, and now we are more than 70, including 53 people on staff in Kampala, 12 in Mobile Hospice Mbarara, and 6 in Little Hospice Hoima. In Kampala, there are 14 people on the medical team, 14 on the education team, and 22 support staff of various kinds, including 5 drivers. In Mobile Hospice Mbarara, the staff includes four palliative care nurse specialists, a medical officer, a part-time palliative care specialist, an education coordinator, a driver, and support staff. In Little Hospice Hoima, there is a part-time consultant doctor, a health services coordinator, a palliative care nurse responsible for community education, a driver, secretary, and general worker.

Over the whole enterprise, there is a physician-director (myself), a deputy physician and research coordinator (Dr. Ekie Kikule), a senior advisor in national policy (Dr. Jack Jagwe, who is our advocate with the Ministry of Health, and an advocate for palliative care and morphine distribution in other African countries), and a project coordinator (Mrs. Winifred Mataze).

In Kampala, our medical team consists of eight palliative care nurse specialists, three medical officers who are in training, one medical consultant in palliative care (a volunteer from UK), a dispenser, and a social needs coordinator. Our first nurse in Kampala, who is now head of education in the hospice, was the sister-in-charge on the hospital gynecology ward where we treated our first patients. She joined us because she saw what she thought was a miracle -- people's pain had never before been controlled, and now, through our work, it was being controlled.

Until last year, our training staff numbered only two. We now have 14 on the education team, through the generosity of the Diana, Princess of Wales Memorial Fund, which gave us funds to increase palliative care education both in Uganda and in other African countries.

Do you have outside consultants from other countries who come in to help you or learn from you?

We have a palliative care consultant from England who just came last month and will be with us for a year. This is the first time I've had another palliative care doctor come to work with the clinical team, which has relieved me quite a bit.

We also have a United Nations doctor, a family practitioner from Nigeria, who's volunteering in Uganda for the next two years. She will be conducting the quality assurance study for our care. We've also had other doctors and quite a few nurses who come to visit and work with us for various lengths of time

Number of People Receiving Direct Patient Care

How many people are you serving through Hospice Uganda?

We now have hospices in three sites, through which we make palliative care available to a population of 2 million in Kampala, 1 million in Mbarara, and 350,000 thousand in Hoima. Eighty percent of our referrals come from the National Referral Hospital, which is the university teaching hospital in Kampala, and the rest mainly from other hospitals in Mbarara and Hoima . We're also training local community "vigilantes," to identify and refer people who don't otherwise have access to health care.

Currently, we have 441 patients receiving care through the three hospices, 233 patients on the program in Kampala, 178 in Mbarara, and in 40 Hoima. We have looked after 4,000 dying people in the 9 years since we began the hospice here. But compared with the number of people with cancer and AIDS estimated to be in pain, we're only hitting the tip of the iceberg.

Home-based Focus of Hospice Care

All the hospice care we provide is home-based care. We chose to provide home-based hospice care rather than in a freestanding hospice, for example, in order to meet the cultural and practical needs of people in this country. Ugandan people prefer to die in their own homes, and they are usually buried in their household gardens. It is very difficult and expensive to transport dead bodies from a distant location, so dying at home is also the cheapest option. At home, moreover, people don't have to comply with all the rules and regulations of hospitals; they can be with their families and have a most peaceful death.

In Kampala, we may first see patients while they are still hospitalized to treat their pain and symptoms; usually, within two days their pain is controlled and they go home. If they live within 20 km of Kampala, we follow them throughout the remainder of their lives. If they live outside of that geographic range, we try to refer them to somebody in their area who knows palliative care, for follow-up care. If this is not possible, the patients' relatives come back and give us news on how they are doing, and we re-prescribe morphine and other medications for them. It's not ideal, but it's all we can do at the moment. But as I mentioned earlier, we really did not visualize providing direct hospice care ourselves in every district of Uganda. What we wanted was to train the health care personnel and thereby reach the whole country through the existing medical services. Now, with the trainee programs and morphine being available in the districts, more and more patients, we hope, will be getting care nearer to their homes.

Cost of Care

Our care, including medicines, costs about $10 per patient per week. We ask patients to pay about $3 towards that cost, but only a third of them can afford to pay. We never refuse care or medicines to a patient because they are unable to pay; we seek to provide care to all who need it within the areas we serve. But in communities at a distance from our hospice, often people don't have the money to pay for medications they may need, sometimes even for aspirin. Because the majority of people are subsistence farmers, they might not even work with cash; they would pay for things in produce, instead. So, that can be a problem in paying for medication.

Identifying Patient and Family Needs

What needs have you identified among people dying of AIDS in Uganda? And what needs do their family caregivers have?

Our research coordinator, Dr. Ekie Kikule, a senior doctor who is my deputy, has carried out three research studies in the last eighteen months, which are the first done in Africa on the needs of dying patients living in the community. She has written a couple of books on this research, which are not yet published.

Dr. Ekie found that the main perceived need of people who are dying is pain relief. The main perceived need of the family or other carers is food, because when the carer is at home looking after someone who is dying, they have to forgo their income or time working on their land. They also may need assistance in caring for children because very often a grandmother is looking after her adult child, who may be dying and leaving small kids behind.

A very big worry of people who are dying, is "What's going to happen to my children?" and "Where are we going to get school fees?" They're dying with unfinished business. They need a great deal of support and counseling. We try to look for funding to help them, although we can't take on orphan support. We network with other services that specialize in orphan support, as well as those that help families to generate income after the breadwinner dies.

Teaching Palliative Care to Health Care Professionals

We've been training health care professionals to provide palliative care since we started the hospice in Kampala. Since early 1994, we have been teaching undergraduate medical students from Makerere University, and in 1998, we began teaching undergraduates from a second medical school, in Mbarara, when we opened the hospice there. We also train our own staff, and more recently we are training nurses and physicians who are working in 15 Ugandan districts, as we introduce morphine use. Since we started doing training, we've trained 800 health professionals and more than a thousand medical students. In April 2002, we began a distance learning diploma in palliative care program for health care professionals in distant parts of Uganda and other African countries.

What do you teach the medical students and health care professionals whom you train?

We teach the whole of palliative care. We emphasize pain management, however, because although there were lots of organizations here providing emotional and practical support to people with AIDS when we came in 1993, no one was providing end-of-life care with pain control. It was a similar situation when Dame Cicely Saunders began hospice in England in 1967 – people were supporting people, but they couldn't relieve pain, so people were not dying in peace. So, attention to pain control was the main thing that we brought. In addition, we introduced health care professionals working throughout Uganda to the holistic approach inherent in palliative care, which was very new to them.

At first, we did mainly didactic training, but in the last two years, we've had the students not only for lectures, but also going out on home visits with our Hospice clinical team.

In the last year, we've extended that experience so that they go both to the Hospice and to the Mildmay International Centre, where the staff are providing a very high standard of AIDS care on an outpatient basis; they don't do home care. Mildmay, a UK-based Christian organization providing HIV care in London and Uganda, dispenses anti-retrovirals and provides other kinds of care.¹⁶ So, the trainees get a day at Mildmay, a day at TASO (The AIDS Support Organization, started in 1987 by Noerine Kaleeba and a group of Ugandans affected by HIV), and then a day with us at the hospice in Kampala.¹⁷ We do the formal teaching. While they are with us, the trainees attend case conferences and hear about many cases. We like to have a multidisciplinary group of trainees, insofar as doctors and nurses will be in practice together. However, we also train groups of medical students and nursing students separately.

To train people in the whole of the country is very challenging, because of the distance to some of the districts and the dangers from warfare on three of our borders, particularly the border with Sudan. Our team (one person from the Ministry of Health, who represents government support for the spread of palliative care, and two palliative care nurses) has gone to 15 Ugandan districts to work primarily with nurses and a few doctors who are working within health units set up by the Ministry of Health. Our trainers are showing them how to examine, diagnose, and manage different kinds of pain. In August and September, 2001, we held a special training in Kampala for health care professionals already working in these districts, as a new initiative in connection with the in-country expansion of oral morphine use to health professionals working in the districts.

In April 2002, we initiated an 18-month, 3-semester program for health care providers working in countries all over Africa to earn a distance learning diploma in palliative medicine. The curriculum is complete, and the funding is almost in place. Although we have taken advice in developing the course from several universities, the accreditation is from Makerere University in Uganda. This is the first palliative care diploma accredited by an African university using purely African experience; there are three other diplomas (from Nairobi, Kenya; South Africa; and Mildmay International, Kampala), but they are all accredited by UK universities.

"Distance learning" means that the participants can stay in their own jobs for the whole 18 months. However, they will come to Kampala for two face-to-face sessions -- a week at the beginning and two weeks half way through. Then, in between these meetings, the learning and teaching are all done via correspondence. We send them what they need to learn. If they're on email and Internet, it's not too bad, but when they're deep in the bush, it may be difficult to reach them. On April 22, we convened 20 health care providers, 12 from Uganda and 8 from other African countries, for the first week of face-to-face learning for this diploma.

Special Strengths of Hospice Uganda

Teamwork

What is unique about Hospice Uganda, compared with other hospice programs?

First, as a team, we focus on the patient and family, and we have developed a remarkable team spirit of hospice, which nurtures all of us. I have worked in hospices in different countries and, one of the problems in hospice is we're all human beings. There's an awful lot of rivalry both within teams and between hospices. That's been my experience in UK, in America, and other places, as well as here. That kind of rivalry actually destroys the spirit of hospice. To me, the main thing is the team spirit, which is rooted in the focus on the patient and family and in a great concern for the other members of the team. So, building a team with that spirit is the most important and most encouraging thing that I have done since I came to Uganda. The staff members on our team really love each other, they work well with each other, and meet together to discuss any problems that may arise.

Outsiders who come on home-care visits with us say they are just so overwhelmed with the way our team loves the patient and family, and shows that love to them when we go to their homes. And the patient and family show that to us, too. So, I hope that the quality assurance report will bring out the strong commitment and respect we have for one another and for the patient and family, although it is hard to measure.

Second, we try to be open and transparent to others working in the same field, and share with them what we know. We're adapting the hospice method to the cultures and the economy of the country.

A third feature of our work is that we respect all faiths—we believe we all share the same god. Ugandans are very spiritual people, and I believe this spiritual dimension helps them cope with life-threatening diseases. About 80-85 percent of Ugandans are Christians and about 13 percent are Muslim. The Catholics have slightly more adherents than the Anglican Church of Uganda; and there are a lot of other Christian faiths represented here, including Pentecostal and charismatic branches of various churches.

Because so many people are sick, many churches are coming here, some from the United States. Unfortunately, some of these people promise that they can cure people with HIV and make them HIV-negative. And sadly, people are willing to go anywhere to listen to these preachers.

What have you found useful in building and sustaining the strong team spirit and love for one another and for your patients and their families?

We have a lot of team building activities that help us keep together. In addition, as we've grown, we've created a management team. The management team consists of one person from each of the other teams. When a new person joins the hospice staff , as part of the education, clinical, administrative or other small teams, that team is responsible for orienting that person to the hospice process and philosophy. Every new person joining receives a paper about the ethos of Hospice Uganda. Ethos document. However, all the team members take responsibility to help a new member coming in.

We have meetings of the whole staff every month where people can talk about any problems that have arisen, as well as smaller meetings with people in different departments, as needed. If people are having a problem, they come and tell us. The health team meets once a month to discuss any problems that may have come up, because any problem can upset things in this big organization. Once a year, we spend a day out together, have a picnic and enjoy ourselves, and we also come together annually for a day of prayer. We provide ongoing support to each other in joys, such as births or marriages, and in sorrows; during those times, we get together, raise a little money and help one another out. If anyone is bereaved, the whole team helps that person, and goes to the funeral.

Have you become an extended family to one another, in a way?

Yes. I was very amused the other day, when some of the staff members were talking about people who stay "at home" and see the walk-in patients and people who go out on home-care visits. They kept saying, "if we stay at home," rather than, "if we stay at the hospice," and I thought, "My goodness, we've really made it", because they feel the hospice is "home."

Attention to Pain Relief

One key way in which we differ from other hospices in Africa is that we're one of the few that offers genuine pain control. We have been quite concerned because throughout Africa at the moment, "palliative care" has become a buzzword to attract funding. People are saying they provide "palliative care," but they've only got "support care." They don't have the ability to treat pain or to provide end-of-life care. We sometimes go into other countries and people tell us, "Oh, we know all about palliative care," yet they're not controlling pain at all. So, although the holistic approach to care traditionally provided by hospice is very important, we differ from some others professing hospice or palliative care in Africa by pushing pain control a great deal.

Uganda is only the third African nation to have brought morphine into the country through legal channels. Zimbabwe and Kenya are the other two. This year, since we began working with them, Tanzania has brought in morphine powder legally for the first time. Malawi is in the process of getting it. In other countries, they may have morphine, but somebody's bringing it in, in a valise, as it were.

We differ from hospices in the UK and America because of the small spectrum of essential drugs that we use (only 31) through which we're achieving relief of pain and symptoms in 95 percent of patients 95 percent of the time. In America, for example, there are thousands of Step 3 analgesics. We have only one, and that's morphine, and it works. I had a communication from somebody in Canada not very long ago that 87 percent of dying Canadian patients are getting all their medication by injection, through morphine pumps. That would not be culturally acceptable here, in any case. We are managing people's pain with oral medications and for the very few that can't take it by mouth, rectal medications.

Attention to Cultural Diversity

How have you tailored what you do to the culture and particular needs of people in the different areas of the country?

We had to learn a great deal about the culture. I have worked in Africa since 1964, the first time in Nigeria, and I have been in different parts of Africa over the years. There is wide cultural diversity among African countries and within every African country, including Uganda. So, during our courses here, we spend at least one or two days on cultural aspects of illness and care, including the cultural approach to pain, AIDS, cancer, and myths about these diseases; the cultural approach to where one would go when one first gets sick; the cultural approach to grief and bereavement, and what happens in the village when somebody dies. Participants in our courses represent the various ethnic and tribal groups in Uganda, and they have shared with the other participants their particular approaches to AIDS, pain, suffering, and loss. In addition, we have taught about various cultural practices that have been detrimental to containing the AIDS epidemic. For example, one cultural practice is that a wife belongs to her husband and if the husband dies, she belongs to his brother. So, if the husband died of AIDS and had infected his wife, she would likely carry HIV to the brother and any new children of that union, and the family would suffer even more.

Traditional medicines and healing practices are other elements of indigenous culture that we have been taking into account in meeting the needs of our patients. Traditional medicines and healers are affordable and people have faith in them; they've used them for many years. Traditional healers have a holistic approach and look at patients in their community settings. So, in many places, this is the way to go. In every training program, we have invited traditional medical practitioners to teach the trainees about traditional medicines that may be useful in palliating the symptoms of AIDS. In our book on pain and symptom management, we describe three different types of traditional medicines that can work.¹⁸ We take this pocket-size book to the countries where we are going now to train health care providers about palliative care. A lot of research needs to be done, still, on the role of traditional medicines in AIDS care.

Barriers to Care, Strategies to Address Them

What were the most difficult barriers you faced when you began Hospice Uganda?

The barriers at the beginning were in obtaining a ready supply of morphine with which to manage pain. I had said I wouldn't come into the country unless morphine was available, and the Minister of Health promised me he would ensure this. Nevertheless, I had a great struggle with some people within the Ministry who didn't want morphine to come into the country. I actually got quite a bad name because of my advocacy for morphine, which I didn't realize until maybe three or four years later.

Another problem here is that because of all the wars we've had up to 1986, particularly from about 1973-1985, recent medical advances haven't come into the country. Therefore, the new specialties and use of medications for symptom management were unknown. In the medical schools, they hadn't heard of palliative care, nor the use of various forms of analgesia, and therefore, senior doctors sometimes opposed what we were trying to do in Hospice Uganda. Also, in the early 1990s, all the misconceptions about morphine that I was told when I qualified as a physician in 1963 were still very prevalent among all the doctors here. So, it was quite a problem to try to make them see that oral morphine is not addictive, and that pain, depression, and other symptoms are important to treat in patients with cancer and AIDS.

How have you sought to overcome these barriers?

One way is through partnering with the Uganda Ministry of Health, which is now bringing together all the aspects of palliative care, and has adopted them into the national health policy plan. This is the first country where the Ministry of Health has taken on palliative care as an essential clinical service in their five-year health plan. We at Hospice Uganda were instrumental in getting them to do that. In 1998, we held a conference for senior officials in the Ministry of Health and the senior consultants. At the conference, we said, "Look, this is where we are in palliative care. Where do we go from here?" After that conference, the whole mood at the Ministry of Health regarding palliative care changed. It was then suggested that we form a team to advise the Ministry of Health. It had to be composed of all Ugandans, so I wasn't involved personally at all. But we appointed Dr. Jack Jagwe, a senior advisor in national policy, a respected physician who was chairman of the National Drug Authority at that time, and he has been working part-time with us and with the government ever since. It was that advisory group that got palliative care into the national health plan for the years 2000 through 2005. So, now we at Hospice Uganda meet with people at the Ministry of Health nearly every two weeks, and we are working with five other African countries that are trying to set up a similar strategy.

Now that palliative care is part of the health plan for the country, how does that help the work of Hospice Uganda?

It helps us a lot, because we've a lot more support from the senior doctors. Recently we had a special day to reconvene the senior doctors and people from the Ministry of Health, some of whom believed that morphine is addictive and even thought we practice euthanasia. We still encounter a few negative attitudes among physicians. For example, we have two young doctors who are specializing in palliative care and doing their higher degrees at the moment here in the country. One senior doctor is constantly telling them that they should get out of palliative care, that it is only for losers, and that they should be in curative medicine.

Those are some of the difficulties. How have we addressed them? Trust in God! Actually, it was the tremendous need here that made our work take off so much, because many people in the Ministry of Health with whom we had been arguing had family members who were dying in pain. Once they have a relative who needs palliative care and they see what we can do, it makes a big difference to them. So these experiences have really helped to move them to recognize the value of our work. We've also used advocates in the university, which have helped us to get respect for the palliative care programs.

Ongoing Challenges

Sustaining Financial Support

Now, the most difficult challenge, and one of the biggest worries, is sustaining financial support. Even now, I spend a lot of my time talking to donors, trying to influence them.

Donor agencies outside of the country now provide about 90 percent of our funding, but in the last few years, local funding has increased. For years we went around to businesses, trying to get them to give us money, and they wouldn't. But now we're becoming almost like the flavor of the month here, and people are even raising funds for us without asking our permission first! So, things are looking up. We've been running annual local charity walks. Every month, we have a sale of second-hand clothing and toys brought in from some of the local international schools, which raises about $150-200 a month. Now, we are about to open a charity shop in the hospice compound, to generate income for our patients.

Accrediting Palliative Care Education

Another challenge has been getting palliative care accredited in the undergraduate medical school curriculum, by the Senate of the universities. We have been teaching undergraduates since 1993, but even though we have pushed and pushed, and our curriculum has been approved by the Faculty of Medicine, it is not yet approved by the Senate because it is not thought to be important and therefore, keeps getting pushed off the agendas of their meetings. So, that's something that still worries us.

Expanding Training Programs

Funding from the Princess Diana Fund is helping us to expand our training programs, and on our recommendations, the Fund also will help other countries with financing. This step was absolutely a miracle, because we hadn't gone on to our third objective of serving as a model to other African countries until then, because we didn't have the funding to help other African countries. Now we are able to do so, and it is a big challenge.

The palliative care nurse specialist training, in which we have trained all our own nurses, is now being extended to the rest of the country, which is another challenge. The Ministry of Health is sending us nurses and we hope to have one palliative care nurse specialist in each district. These nurses will be registered with the Ministry of Health and when the law is altered to allow them to prescribe morphine, this network of nurses will really help many patients. That regulatory change is due to happen any minute, but it's been any minute for two years now! We're meeting with members of Parliament within the next month with a view to altering that statute.

Undertaking More Research

Another challenge is following through on a lot of research that needs to be done. Our research interests are in managing pain and other symptoms, drug metabolism, and many other areas. For example, we would like to research the association between a patient's degree of spirituality and how well pain is relieved; and we are looking at why nurses achieve relief of pain in patients more often than physicians do. We are engaging our students, who come from all over the world, in some retrospective analyses of our case sheets, which document many aspects of patients' needs and care, including the cultural, social, and spiritual aspects.

Lessons Learned

What are your major "lessons learned" from your hospice work in Africa that might be helpful to other people seeking to undertake something similar?

First, as I said, we have learned that the service needs a team willing to focus on the patient and family and to support each other. When I talk to the team, I keep having to bring them back to the idea that everything we do has to be focused on the patient and the family and their needs.

Second, you can't give training without having a service to demonstrate that it works, so a model program needs to run alongside a training program. I think that's very important. In addition, you can't run a palliative care service without training your own team. We've had a problem recently in Malawi where they wanted to provide morphine, but didn't want any training in pain management and palliative care. That doesn't work. They have to understand how to use this drug, and the holistic approach to care.

Third, in every country in which I've been, it's been very important that we work with the Ministry of Health and existing structures throughout the country, because that is the best way to make a palliative care program sustainable in the future. This is because the Ministry of Health and the health programs will continue, but the missionaries and the non-governmental organizations will move on. To ensure that the work continues, it is important that other health professionals are on board with what we're doing, as well. When I'm no longer here, I hope this work will continue, but it mightn't, or it could continue in a different way. My hope is that if we've permeated the philosophy and practice of palliative care throughout the health structures in the country, it will continue in some form.

I do think it can continue. Over the last three years, Dr. Lydia Mpanga, a Ugandan palliative care specialist, was working with me and I expected her to take over Hospice Uganda when I retire. She has all the qualities you would need; you couldn't meet a better person to take it over. Unfortunately, last year her husband was transferred to South Africa, but she said she's coming back at the end of this year and will take over from me then. When she comes back, she'll be part-time with us and part-time with the Makerere University, where I hope she will one day become their first professor of palliative medicine.

I think we've now got an excellent, committed team to carry on the work. Turnover of staff is quite small. When people are dedicated to the work, they stay.

What advice would you give to other people who want to start up a program like yours?

There's two ways to do it. You can either do what we did, which is start up on our own, or you can graft it onto already existing support services. I think that grafting onto another service is possibly more appropriate in the present AIDS epidemic because most countries have some kind of a support service that is already going into people's homes. You need to persuade health professionals to be part of that service and also to get the government to allow them to have the analgesic drugs. I think that's going to be the quickest way to get appropriate care to people.

Another piece of advice would be to look at which professions and how many people are allowed to prescribe morphine. Every African country is different, so that needs to be looked at when starting up, if you're going to disseminate pain control throughout the country.

Getting the team spirit is one of the most difficult things, and I just don't know how you can transfer that to so many different people. In Africa, the bottom line is that people are very, very poor and everybody's scrambling to get the most money they can. For example, in Malawi, the salaries for nurses are something like $18 a month. When you're in that situation, it's very difficult to give your love and care to everybody. As one nurse said to me, "How can I feed a patient when I'm hungry myself?"

So, I think that one of the biggest problems is getting that spirit in when people are so worried about their own families. There is a tendency in Africa, in Uganda, to live only for one's immediate family; because people spent so many years not knowing if they would be alive the next day, they lived only for the day. Now, the challenge is to get them out of that mode, to extend that love to people outside their family and throughout the country. It's coming, but it's slow.

One of the biggest problems that has come up here is that people think that Africa is the same as the rest of the world, and because of that, donors have put a lot of funds into training counselors. When people are first diagnosed with AIDS, they do need counselors, but now many counselors have been trained and they are being paid higher salaries than nurses, so that nurses are leaving nursing and going into counseling! Unfortunately, patients in severe pain cannot listen to counselors. First, you have to address people's pain; then, they may benefit from counseling. So, donors need to understand the unique characteristics of AIDS in Africa and provide support for what is needed most.

Do you feel that you've learned anything from working in Africa that would be of help to people working in the United States or other modern, industrialized countries?

We have an awful lot to learn from Africa. In England, Europe and North America, we have very big problems with bereavement and psychological issues, because in our affluent societies, we have time to sit back and reflect: Our people die at an old age, and a man who loses his wife of 50 years very often suffers severe depression. In Uganda, where so many people die in the prime of life, there is a set time for grief, when people cry and scream and get it all out of their system, but once that period is up, they have to get back to feeding the children and life has to go on. It is rare that bereavement here turns into psychological pathology. We may be able to learn something from Africa to help us cope better with our own losses.

References

1. Barnard D. International Policy Report, Introduction. Journal of Palliative Medicine. 2002;5(1):159.[Return to International Perspectives]

2. Jagwe JGM. The introduction of palliative care in Uganda. Journal of Palliative Medicine. 2002;5(1):160-163.[Return to International Perspectives]

3. See www.hospicecare.com/Awards/awardwinners/individual_winner/2001winner.htm.[Return to International Perspectives]

4. Personal communication to Anne Merriman from Dr. Elizabeth Madraa, Program Manager for STD and AIDS Control, Ministry of Health, Uganda, April 2002.[Return to International Perspectives]

5. Personal communication to Anne Merriman from Dr. Elizabeth Madraa, April 2002.[Return to International Perspectives]

6. UNAIDS/WHO AIDS Epidemic Update, December 2001.[Return to International Perspectives]

7. Jagwe JGM 2002.[Return to International Perspectives]

8. Personal communication to Anne Merriman from Dr. Elizabeth Madraa, April 2002.[Return to International Perspectives]

9. UNDP Uganda Report 1998. New York: United Nations.[Return to International Perspectives]

10. UNDP Uganda Development Report 1998. [Return to International Perspectives]

11. Jagwe JGM 2002.[Return to International Perspectives]

12. Ministry of Finance, Uganda. Population and Economic Report. Background to the Budget, 1998-1999.[Return to International Perspectives]

13. Ministry of Health, Uganda, 2001.[Return to International Perspectives]

14. Personal communications to Anne Merriman from Dr. Elly Katabira, National Referral Hospital HIV Clinic, Kampala, Uganda (1998) and Dr. Veronica Moss, Mildmay International Centre, Kampala, Uganda (2000).[Return to International Perspectives]

15. Merriman A. Living while dying. Contact. October 1991.[Return to International Perspectives]

16. For more information about Mildmay International, see http://www.mildmay.org.uk/MildInt.html. [Return to International Perspectives]

17. For more information about The AIDS Support Organization (TASO), see http://www.taso.co.ug/tmovt.htm. [Return to International Perspectives]

18. Merriman A. Pain and Symptom Control in Uganda and Other African Countries for Patients with Cancer and AIDS. 3rd edition. Kisube-Entebbe: Marianum Press, Ltd., 2002. [Return to International Perspectives]

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