The palliative care training at Kiruddu National Referral Hospital in Kampala, Uganda, was for only two days yet its outcomes are limitless.

One participant, a social worker named Musa, attended the training in June told me, “I have been seeing these people around, the ones of palliative care, but now I know what they do. I am going to work with them.” 

Musa is one of the 26 professionals who has completed the training and now is one of the mentees on the ongoing mentorship with the Palliative care Education and Research Consortium (PcERC).

The PcERC team delivered this jam-packed two-day training in two groups; the first given over September 15-16, 2022, and the second on June 29-30, 2023.

The trainees included nurses, pharmacists, and social workers who are employees of Kiruddu Hospital. Sessions covered the basics of palliative care, with a holistic approach and communication skills training, and how to integrate them in their own profession and setting. 

Daphine, a hospital pharmacist, had several takeaways from the training, as she plans to spend more time with patients and their families. In particular, she wants to practice her new-found communication skills to explain their prescription, identify and address fears, and be sure to educate them on possible side effects and how to manage symptoms.

Daphine and other participants were able to demonstrate their skills through role plays in the training, groupwork, and group presentations with instructor feedback.

They were also given laminated copies of the Pain and Symptom management protocols, to keep at their respective hospital stations for reference. 

The PcERC team received evaluation feedback from the training, with most participants requesting for more time for the palliative care training and about a third specifying that they wanted ongoing training updates on palliative care.

Reported key takeaways were on pain assessment, pain management, communication skills (including breaking bad news) and end of life care.

The hospital administrator, Mr Elisa Mugisha, opened the second group of training in June and spoke on the need for palliative care. “Integrating this kind of care which has been missing is going to be a great asset,” he told the nurses, pharmacists, and social workers.

“In the medical field, it is important to modify the curriculum and to keep improving the curriculum. I would like to encourage the people who are attending to implement this programme and to be sure to let the team know if you have any problems.  We commit to support you.”

After his address, he mentioned to the PcERC team that, “You can even start training every month, and train another group to make critical mass of people in July!”

The support and welcome for palliative care in an integrated Ugandan Ministry of Health hospital cannot be any better than that.

These trainings have been supported by Cairdeas IPCT and we are pleased for the reception from Kiruddu Hospital administration and healthcare professionals. 

Many thanks to all partners for the trainings and ongoing mentorship. 
 

How can we promote accessible and compassionate palliative care in Uganda? 

Through a fundraiser walk? These days, counting each kilometre—or mile or step—can seem like a drudge of numerical exercise. Akin to a sitting room workout, we wonder on the point or reasoning behind so many push-ups every day. 

I have participated in walks and other fundraisers before, but this year’s Journey through Uganda is more than the numbers completed. Actually, the journey is as much as a learning process on palliative care development as it is a reflection and a prayer. 

You may have already started the milestone journey on our website. You’ll find that a cornerstone of the work in Uganda is education: training those who are working in health care and building capacity in our partner’s staff. Three of the Cairdeas scholars live in Uganda, with two advancing in social work while another completes studies in nursing. 

We conducted a new interview with one scholar, Philip Amol Kuol, to hear his experience as a South Sudanese refugee, social worker, translator, and community health advocate. Philip recently told us, “Most of the patients are dying because of lack of good care to them. Because the more they realise that you are almost giving up on them, they feel like they should die … but if you have committed yourself to give good care to the person, the person will feel more that people still love them in the world.” 

He shares more about the dignity and restored life given by access to quality palliative care below.

A recent pilot research conducted in the area where Philip Amol lives brings new perspective to the lived experiences of those with chronic illness. As we look through the Photovoice methods, from pictures taken and critical dialogue recorded, the reflection on Journey through Uganda continues. 

In May, another scholar named Godfrey Oziti from Peace Hospice discussed his passion for palliative care with me. He defined his work as “a kind of care that gives the patient’s life back and is enjoying life again” and added: “I like to transform the patient so they are not just counting down the days.”

To cease the counting down of days to refocus on life again for a patient, I muse, as I think of how I count the kilometres for Journey through Uganda. Both involve numbers, yet I find joy in my counting exercise of this first-ever Cairdeas IPCT walk. 

While I exercise and support the work of Cairdeas’ partners in Uganda, a chronically ill patient has just been treated and cared for with dignity and respect. As we build up the fundraiser more this June, more patients and their families find hope amid severe health-related suffering as trained health care professionals address physical, psychological, emotional, and spiritual concerns. 

Our support during the Journey through Uganda funds those like Liz Nabirye, a Clinical Officer and Lead in the Palliative care Education and Research Consortium (PcERC). She not only offers consultations at no-cost to hospitalised patients but also trains dozens of medical students in palliative care. 

I had the honour of attending a training with Liz Nabirye last week. When the question was asked on how to motivate a chronically ill patient to choose a healthy lifestyle and attend counselling, the rest of us were quiet and puzzled. Liz said, “There is a need to understand the circumstances which contribute to this person’s situation and identify what they think as a patient need to achieve. For example, there is need to be patient-centred and holistic in nature, which will definitely require multi-disciplinary support.”

The knowledge, skills, care, and approach being held by our partners Peace Hospice and PcERC have been spreading to their professional colleagues and medical students. Holistic palliative care is more accessible than ever before, and all at Cairdeas IPCT are pleased to be working with those in Uganda.

What an impact and how much value is being created for compassionate palliative care! Join us and register for the Journey through Uganda fundraiser this June.

In the last year, Cairdeas IPCT has partnered with the Islamic University of Gaza (IUG) and the Turkish-Palestinian Friendship Hospital (TPFH) to create a palliative care professional diploma programme. Together, with the support of the University of Edinburgh and Palliative Care in Humanitarian Aid Situations and Emergencies (PallCHASE), the students have covered six modules of instruction with visiting faculty, as well as clinical instruction and fortnightly, virtual teaching sessions. 

Our Medical Director, Dr Mhoira Leng, alongside Dr Khamis Elessi the Gaza lead, have been mentoring and supporting the TPFH to develop and implement a palliative care clinical programme. 

The next international faculty visits will be in August 2023, and we wanted to hear from some of the students for their key observations, feedback, and experiences. We asked members of the TPFH palliative care team who are also students on the Diploma. 

One student, Suha S. Shaa’th, a senior pharmacist who is also the lead for opiate procurement, shared several reflections on palliative care. She explained “the importance of letting patients live in dignity and die in peace,” while adding that “palliative care reinforces the sense of humanity and improve the concept of compassion and empathy, that means we do not deal with patients as numbers.” Suha highlighted her skills gained through the diploma programme, such as communication, working in multidisciplinary teams and evidence-based practice. 

A physician specialising in pain and palliative care management at TPFH, Amjad F. Eleiwa, spoke about the knowledge gained from the programme, saying, “I started to deal with the patient not only as someone in pain, but also as a whole person.” Amjad then shared a patient story to illustrate holistic care:

"A few weeks back, I had a 26-year-old patient who was diagnosed to have Ewing sarcoma. The patient started his management in Jordan then was referred back to Gaza after expiring all lines of treatment … The issue we faced is the shortage of controlled release oral morphine in Gaza and  that is where the palliative care training came in. We started to look for available alternatives and gave him sub cutaneous injections of morphine and patches of fentanyl. His pain started to get under control."

"During our work with the patient, we noticed that he accepted his condition but not his mother. She was so close to him and she had a lot of questions like "why him?". We had our focus on the patient and on his mother to prepare her for the inevitable: his death."

"At the end, she was thankful that he died in peace with no pain and with great acceptance."

We will close with the comments from Basel M. Ashour, a psychologist and student in the diploma programme. Basel noted that “psychological pain is considered one of the most aggressive pain among cancer patients” then discussed how “palliative care added to my experience how to know other team’s knowledge … about nutrition, pain management, physiotherapy, etc.”

He concluded: “Many people just need us to spend time with them, to communicate well, to be dealt with extra respect and be granted dignity and humanity.” 

We will share more of the experiences of students and faculty in the future. We thank all the students in diploma programme for their implantation of compassionate palliative care; may we all continue to uphold dignity and humanity.