I read that you developed your passion for palliative care while working at the HIV/AIDS department of St Mary’s Hospital Lacor in Northern Uganda. Can you take me through that journey?
It has been some time since working in the general out-patient department, that was in 2007, when I joined the HIV/ AIDS clinic. We saw over 12 000 clients living with HIV/AIDS since 2004 and we are still treating many patients.
I developed that passion because I saw many cases of HIV-related cancer, for instance Kaposi’s Sarcoma, cervical cancer and Hepatocellular Carcinoma, to mention but a few. These patients came with a lot of pain. There were no proper pain medications in the ward and the clinic, more attention was put on the curative aspect of the disease. When I came to know about Hospice Africa Uganda and their services of pain management and symptom control, I saw that I needed that training. Seeing how the patients were suffering, I said why don’t I come, do this course, and then treat them.
I saw that the need was enormous and I took the opportunity to have the training that HAU offered.
At the moment, you are a student on the new BSc programme offered by Hospice Africa Uganda. Can you tell me more about this course?
I am in 2nd year of the BSc, so I am still a student, and also working in the Palliative Care Unit of Lacor Hospital. The palliative care distance learning course has made it convenient for me to work and study at the same time. I hope to graduate next year and with a first class degree in palliative care so that I can be a teaching assistant in any university and teach palliative care to the medical students who can apply the skills and knowledge in palliative care to help our patients who are in need. I currently hold the Diploma in Palliative Care, which is equivalent to the first year of the degree.
Under Ugandan law, this qualifies me to be a prescriber of morphine and other narcotic medications.
I read that an in-patient unit and out-patient service was recently established at St Mary’s hospital Lacor. Can you tell me a bit more about your role in this?
When I completed my palliative care training in 2010-2011 I started the in-patient consultative palliative care services, a model similar to the one being offered by Mulago Palliative Care Unit under the leadership of Dr. Mhoira Leng. An out-patient palliative care unit was also started in the HIV/AIDS clinic. As I was based in the Anti-Retroviral (ARV) clinic, and because patients keep on coming with pain, I thought why not open a palliative care unit in the ARV clinic so that I can see patients with palliative care needs, to integrate the services. So when I’m seeing other patients with HIV and ARV needs I also provide palliative care service concurrently.
I looked at having a separate clinic, but realised that going back and forth was not practical for easy provision of the services. It goes back to that concept of HIV and palliative care being related because HIV/AIDS has cancers and other painful conditions associated with it and all these requires the holistic approach of palliative care.
Now, when they saw that out-patient palliative care was doing a good service, the other units in the hospital started calling the palliative care team to visit patients in the wards. Then we decided to move to the in-patient service and see patients who are bedridden, who cannot be referred to the clinic. So we decided to work as a consultant palliative care service for the in-patients.
Are there particular challenges to providing palliative care in Uganda? If so, what are these?
There are actually a lot of challenges – the first is that it is very difficult to get an education in palliative care. The tuition fees to gaining education are very high. The course at HAU costs around 13 million Ugandan Shillings, which is equal to 5400 US Dollars. For most Ugandans it is not easy to raise this money. There are few health workers who can access this vital education. I appeal to Help the Hospices UK, and the International Association for Hospice and Palliative Care to continue extending their bursaries to the African students pursuing palliative care but who are unable to raise that amount of money as course fees.
Another challenge is that the patients come to us when it is too late, when the cancer has metastised everywhere, so they need many treatments. These many include chemotherapy or even radiotherapy for their cancer, anti-retroviral drugs and the medications for pain and other symptoms associated with either cancer or HIV/AIDS. It becomes very expensive for the patients. It is too expensive to treat the patient.
In many countries in Africa, the laws are very restrictive. Ugandan law says that you need to be a doctor to prescribe narcotics. But you find that there are very few doctors who can give care to these patients. Even the few doctors that are there, their contact with the patients is minimal. When HAU came in, in 1993, they pushed so hard that now as I talk even a clinical officer like me or a registered nurse, can do 18 months of training to be able to prescribe morphine or a 6-9 months clinical palliative care course. The government of Uganda has also gone further in ensuring many narcotic prescribers by intensive training of clinical officers for six weeks in a course named “Clinical Officers Rapid Morphine Prescribers’ Course” and after successfully completing the course, the clinicians are allowed by law to prescribe narcotics to the patients who may be in distressing pain.
So it was a very big step by HAU to convince the legislators so that they can pass the statutory document to provide training to clinical officers and nurses for 6-18 months to make them into prescribing officers for restricted pain medication.
Another huge challenge is logistics and resource mobilisation. Often our patients cannot come and seek services. Palliative care centres may be very far from their home. If there were ambulances to bring them to centres or vehicles to take health workers to patients, that would solve some of the problem.
Now we hear a lot about the challenges to providing palliative care in Africa, are there any factors that make it easier to provide palliative care in Uganda?
In the African context it is easy to provide palliative care but of course there are the key challenges that we face. Culturally our people can provide an affordable palliative care that is tailored to the African contexts. We can develop very many models in response to challenges. The model that I have in our unit is called the facility-based model of palliative care, we go and then see patients from the ward, even patients come to the clinic.
Of course, we can also provide roadside clinics on our way to an outreach post. The outreach post can be in another facility far from the main palliative care unit. The outreach model may also be provided at the veranda of someone’s home, church or school.
So it seems that in Uganda you are able to provide creative solutions and adapt to the constraints and challenges that you face…
We can adapt to many situations, but we are not able to adapt to everything. We can provide culturally affordable palliative care within our means, but we do have the challenges that I mentioned already.
Did you find that the HAU course prepared you well for dealing with these challenges?
Yes, they have actually. It is a very comprehensive course which has changed how I look at a patient. I used to look at the curative aspect of the patient, but through my studies with HAU, how I look at the patient has changed totally. This is continuing as my training progresses. I look at not only the physical aspect of patient, but also the psychological, social and spiritual aspects that make up the total person.
At HAU, the class work was so intensive. I managed to learn a lot. Also, as students we moved with the team of HAU. We got to see what the team does in the community. This hands-on training was very important.
It is a very comprehensive course.
In your opinion, is palliative care education important to Africa? If so, why?
Palliative care itself is very important in Africa. One of the reasons for this is that Africans have poor health-seeking behaviour. I’ll just quote you a rough statistic: More than 80% of cancers we see in hospital cannot be operated on. We cannot leave these patients to die from pain, therefore the only option is palliative care.
Also, the preventive measures in Africa are a not up-to-date. For example, the Hepatitis B Vaccine and Human Papiloma Virus Vaccine against cervical cancer. The government has only recently started providing Hepatitis B vaccinations to children. This began in 2000. Now for very many people who were born before the year 2000, they have the risk of developing Hepatitis B, which can develop into cancer.
It costs 30- 40 US Dollars to get a Hepatitis B vaccination. For people who have a shortage of food, they would rather pay for food than for preventive injections. We don’t know how long it will be until these are free for all Ugandans.
Another factor is the number of health workers per patient. There is a very high ratio of patients to healthcare workers. In Uganda, 58% of patients do not seek the service of a trained health worker. Even the ones who see the heath worker, they are overworked. I see between 50 -75 patients per day from my health facility St. Mary’s Hospital Lacor.
Therefore it is important that we provide more accessible education in palliative care.
When the healthcare workers come on board, when we train, we can also bridge that gap in people who can handle cases of cancer before they progress.
Have you been able to draw on the influence of others working in palliative care in your country and elsewhere?
I was influenced by many people who have been offering palliative care services.
I recently wrote an audit report, where I was actually motivated by many people, one of whom is Joan Dunn, who inspired me by being a good mentor. I was also influenced by Dr Anne Merriman who from nowhere and with no resources built up Hospice Africa Uganda to what it is today. The passionate care provided by HAU team inspired me to take up palliative care to the highest level. Eventually with determination and with good work, even as we talk her work has now has gone beyond the borders of Uganda.
I am inspired by Dr Merriman’s force of working hard, and I always quote her words:
“Every pain and symptom that is controlled is a little resurrection for our patients”.
If you can control a patient’s pain and that patient smiles, it is a great thing that can be done to a human being. I am inspired not only by fellow health workers; I am inspired by patients themselves. Patients who say: “Thank-you doctor, I can speak, I can eat, I can go to the office…”
We spoke a bit about the role of government in palliative care in Africa. Could you talk more about that?
I was looking at government as a whole in Uganda and in Africa in general to try to consider palliative care as an essential component of governance. The Ugandan government has increased the number of prescribers by changing the law to allow nurses and healthcare workers to prescribe morphine and other pain medication.
I commend the government of Uganda. I call on other African governments to do the same. When fellow students from other African countries apart from Uganda go back to their countries, they are trained in palliative care, but some, especially nurses, are not able to use all their new skills, because of laws that do not allow them to prescribe pain medication. I am calling on the African governments, those working in the health ministries to pass the laws to allow prescribing of narcotics by nurses. Please, it has worked in Uganda, let it work in other countries in Africa.
It is better to shift the task from doctors to nurses. It is this way that we will be able to extend the practice of palliative care in countries in Africa.
Governments also need to support logistics and mobilise this support. Health workers need water to take when they go out to work, they need food to eat when doing outreaches and much as we can adapt to one or more challenges, others like hunger and thirst may be not be adopted to and budgets need to be allocated for palliative care. Services cannot be provided on an empty stomach. Governments need to budget for palliative care. I am calling on governments to consider palliative care in their budgets under the primary health care activities.
Finally, other African governments should include palliative care in the curricula of medical students, nurses and Allied Professionals. Most medical and nursing schools in Uganda have incorporated palliative care into the modules of the courses provided. Here palliative care is an examinable course. When students come out of school, they come out with knowledge. I qualified in 2002 as a medical clinical officer but at that time there was no palliative care in our curriculum. I came and trained with HAU, through their mentoring model. If I had training earlier, I would have been able to provide palliative care earlier.
Is there anything that we haven’t spoken about that you would like to add?
Yes, there is something that I want to speak about. I cannot show enough appreciation. Firstly to St Mary’s Hospital Lacor in Gulu Uganda, my employer, who gave me the time to go and study palliative care with IHPCA.
Then to HAU for extending their agenda to provide palliative care training across Africa and Uganda, through IHPCA.
Also I thank Help the Hospices UK and all the stakeholders. It has not been an easy thing to get the money to go to school. It is not easy to raise the fees. I thank HAU and Lacor Hospital who in first year paid my fees, and Help the Hospices UK and the Wolfson International Bursaries for financial support in my second year.
I thank the International Association of Hospice and Palliative Care (IAHPC) and most importantly Karl Benn, Anna Maria Restrepos and all the grant team of Help the Hospices and IAHPC for paying the course fees for part of my second and third year BSc. I also call on all the stakeholders mentioned already to help us to extend that most needed service by continuing to support palliative care education in Africa which will enable more trained health workers to help many of our patients suffering from pain related to HIV/AIDS and associated cancers.
i am a nurse student who would like to know more about palliative healthcare in Uganda. I would like to have acces to a email address of Dr. Okongo Francis a schedule a interview. Is there any possibility to uptain an address, so I could get in contact with Dr. Okongo F.
Most kindly regards