Blog submitted by Dr Nahla Gafer, a clinical oncologist at the Khartoum Oncology Hospital, Sudan. Dr Gafer has been involved in past regional training in palliative care, such as the Kuwait WHO PC workshop and in Mauritania through Cairdeas Sahara. Today she shares about her recent workshop for psychologists and social workers. 

Let me start with the beginning of my palliative care journey: it was 2009, and for the first time, I attended a formal course in palliative care at Hospice Africa Uganda. I was intrigued by the weather, intrigued by the vegetation, and intrigued by the organization. I remember meeting Prof Anne Merriman in a beautiful summer house. And I remember seeing a coloured brochure describing items like a 5 week Initiators course, a 3 day workshop for psychologists, and 9 month programme for nurses. I was thrown out of my feet. How organized they are and how developed they are in palliative care!

Years pass, a palliative care unit is born with staff from Sudan are trained in palliative care. I go abroad to complete my Master’s degree in palliative care, and I advocate for palliative care. In this time, I meet SANAD Lebanese Association for Palliative Care and our team trains in a Hospice@Home programme. SANAD then organizes an online course for 27 health professionals, where several psychologists attend the workshop. The director of training at the Ministry of Health in Sudan contacts me about further training. And so, a three day palliative care workshop for psychologists and social workers is planned for and conducted end of 2022.

I am so glad that I was able to conduct this workshop. In the beginning I thought I could not elaborate much when it comes to items like symptom management as they are not doctors. Yet I discovered that when teaching palliative care, a lot can be explained even to non-health professionals, and especially for the candidates in this workshop, the majority of whom have long experiences in specialised hospitals.

Twenty-five psychologists and twenty-five social workers attended the workshop, representing 23 specialized hospitals as well as the Federal Ministry of Health. My job was easy, I just gave them a new outlook for the problem: the patient is the centre of our care, we are here to help the patient and family until the end by providing explanations, support, symptom management and a listening ear.

It was a wonderful experience for all. As an example, we came up with 50 activities for self-care, and as I mentioned even for symptom management I succeeded in explaining a lot: what symptoms to expect in which diseases, how to assess them, how to think holistically and how to manage those symptoms non pharmacologically. As for the pharmacological management, I asked them what medications we use, without elaborating on the doses, route, or timing.

We delved into family issues, attachment types, complicated grief, suicidal tendencies, distress, anxiety and depression. It was very interactive and very engaging. I was joined by nurse named Wafa Abdalla and a psychologist, Eman Mansour, who both came from our palliative care unit to assist me in the training. 

The feedback after each session was great. Candidates mentioned that they learned important concepts like: patient’s dignity, patient’s rights, quality of life, taking into consideration patient's age, understanding and cultural background, the six steps involved in breaking bad news, instilling hope, different types of hope, the importance of explaining the disease to the patient and family, and most importantly that palliative care brings back humanity to the patient (i.e. patient feels he/she has a say in what is happening).

They felt palliative care aligns well with the needs of the patients they meet in their day-to-day work, and a couple of them were eager to contact their administration for training in their hospitals, with a subsequent plan to provide the services. I am open to help, and I am thankful for all my teachers in palliative care.

We are always keen to support palliative care education and training, especially regarding palliative care integration in the national health systems. Our partner the Palliative care Education and Research Consortium (PcERC) has accomplished quite a bit of this health system integration in Mulago and Kiruddu Hospitals of Kampala, Uganda and they provide good examples of what can be done in the Sub-Saharan Africa (SSA) context. 

We were quite pleased to welcome a group of visiting Francophone health care professionals, from all over Africa –Congo, Cote D’Ivoire, Senegal, Togo among others – and even from Haiti. They visited Mulago Hospital with our partner PcERC last week on January 25th. These professionals were attending a course at the Institute of Hospice and Palliative Care in Africa, which most of you may know as Hospice Africa Uganda (HAU). 

For many of the visiting health care professionals and leaders, seeing a palliative care unit work inside the hospital system was a concept only discussed in textbooks. All were encouraged to see how palliative care can be incorporated within the government hospital.

One method included LINK nurse trainings, where nurses are trained to take care of some palliative care needs while referring complex needs to PcERC. Another current integration involves rotating intern doctors and SHOs who take turns to partner with the unit and grow their skills in palliative medicine while they are there. 

Mutual learning also happened during the visit to Mulago Hospital. After spending time on the ward in small groups, we gathered together to debrief and to understand what was happening with each patient and how the palliative care unit could work with hospital staff and family caregivers to improve care. 

Dr Mhoira Leng spoke on integrating palliative care -- leaving none behind -- and one of the key concepts was the transformative power of palliative care. With value-based care, she introduced the topic, you are "promoting dignity, relieving suffering, demonstrating compassion, [and] fighting for justice."

This set the theme for the presentation, from palliative care in fragile settings, to our planetary health, to the challenges that have been overcome in the Kampala governement hospitals to bringing palliative care to all. 

Of course, the visit with the Francophone health care professionals came with a twist: translation! We had several visiting French to English translators, and some on the Cairdeas and PcERC team took time to practice their basic French skills.

As I was watching the interactions, I was touched by how the work for quality, accessible and integrated palliative care transcended culture, country, and even language. From ward rounds to the post-ward round discussion and presentation on transformative palliative care from Dr Mhoira Leng, it was clear that compassionate and holistic care was important to all involved.

To our new colleagues and friends part of the Francophone class at Institute of Hospice and Palliative Care in Africa, we are pleased and proud to be working with you in establishing palliative care in each of your respective communities. 

As declared on the t-shirts of the group, “I support palliative care in Africa.” Je soutiens les soins palliatifs en Afrique. Let’s continue the good work of palliative care provision and integrated services.  

– Simon Maku, clinical officer, volunteering in Peace Hospice Adjumani (PEACHOA), Uganda.

This was the first time Simon Maku ever completed a Needs Assessment, a type of data collection tool to determine the exact medical and social conditions of those living with palliative care needs in a certain area. It was also my first Needs Assessment in rural Northern Uganda, and I learned quite a bit with the traveling medical team and community-based Village Health Teams (VHTs). 

Our traveling team of five included Dr Mhoira Leng, in addition to Vicky Opia, Godfrey Oziti and Simon Maku from PEACHOA, and Toko Friday and myself from the Palliative care Education and Research Consortium (PcERC). We were very happy to work with a team of thirteen VHT mentors and VHTs, who connected us to each individual and family and often served as translators. 

You might be wondering what is involved in a Needs Assessment? Of course, we are to collect data, but there’s something to be said on how it is completed and its connection to the bigger picture of developing quality palliative care for all. Our recent one was in Obongi district of Northern Uganda from the 5th to 8th of January when it was not too hot (nor rainy). 

The data collection work started weeks in advance with the support from our administrative teams and Godfrey, who did an excellent job coordinating the VHT Mentors and VHTs. From our records, in some three villages in Obongi district (Dama, Bongilo, and Pasu), there was 126 individuals identified in advance by the VHT Mentors and VHTs with possible palliative care needs. With much teamwork and effort, we visited 117 of these individuals in their own homes.

Let me just pause for a moment: over a 4-day period we met and screened 117 people (almost 30 a day!) for palliative care needs. And even if they did not have a chronic, serious illness, we always took a moment to listen and counsel, share medical advice, and perhaps write a referral to a nearby health centre for further investigations and care. Those who did have palliative care needs were given a more detailed assessment, often with a lot of translation support, and some 81 individuals were then recruited to the Needs Assessment study.

Yet this was more than “a study,” I felt many times during the trip, this was getting to know each individual as a person, not a patient. Some spoke about their children who have died, or their husbands out of country. Others did not speak much but created beauty with artwork on the walls and maintaining beautiful, trimmed hedges around their home that spoke of better times. There was also a lack of food (tight rations) and eating one meal a day could be struggle. 

One particular gentleman I visited with Toko Friday was a retired teacher from South Sudan. In addition to having cancer of the throat, he had others issues with his refugee status, which greatly affected the care he could receive at local and national health centres. Thankfully our team was to connect with those who handle refugee statuses as well as look into what kind of oncology support that he could receive, and we know that the VHT Mentors and VHTs will continue to liaise with and support him.

I found the Needs Assessment trip to be the bridge between the deep connection of humanity and suffering and the call for health system changes. 

One moment, we were meeting one-on-one with someone like the retired teacher who had many levels of need but couldn’t stop smiling and cracking a joke or two about oncology doctors, while other times we sat with worried family, who had many questions for us, including inquiries about getting a wheelchair for their child who has a complex disability.

We saw the needs in the data collection even: initial findings report that a third had neurological conditions (acquired brain injury, complex and learning disabilities, Parkinson’s, etc.) with many others live with HIV/AIDS and musculoskeletal or chronic pain. These serious, chronic illnesses took a toll on the individual and their family, with high levels of distress reported, as well as the inability to work or perform daily tasks.

Our advocacy has begun to make palliative care as common as malaria. Even during our trip, we shared our Needs Assessment work and initial findings with the Obongi District Health Official (DHO) Mr Dominic Lomurecu.

Mr Lomurecu was already aware of and supported our activities, recognising the need for quality, accessible palliative care in Obongi district. He was in favour for more training of palliative care in Northern Uganda, which included communicating to other stakeholders about the unmet needs and how we all can integrate palliative care in all the health services. 

Readily identified and accessible care, with widespread education and desensitisation from the healthcare workers to VHTs to the family caregivers, is a global palliative care need. Just as outbreaks of malaria demand a response from various organisations – i.e., to control the mosquito population, provide care for the ill, and educate the community – so does the need for palliative care must be met by many stakeholders in multiple levels.

And our time of Needs Assessment in places like Bongilo, Dama, and Pasu villages in Northern Uganda did confirm quite several unmet palliative care and psychosocial needs. 

Please stay tuned for further updates in this work of creating quality, accessible palliative care. We will be sharing more blogs soon about the VHT Mentors and VHTs and how it is to live in fragile setting with palliative care needs.