Bringing Hope Through Palliative Care in Uganda

On behalf of the Palliative Care Education and Research Consortium (PcERC), we are pleased to give you an update on our activities. Over the past four months, PcERC has continued to advance comprehensive palliative care for both adults and children, across Uganda. Working in close collaboration with Mulago and Kiruddu National Referral Hospitals, we’ve strengthened specialist services through established referral pathways. The unit is run by a dedicated team comprising six PCERC staff, three public service health workers, seven volunteers, and one Makerere University staff member who ensures smooth operations across both hospitals.

As a national center of excellence, PcERC delivered specialized, evidence-based care to 237 patients, including 25 children under 18. We supported 528 family caregivers to promote continuity of care, with 116 male and 121 female patients receiving services. Among them, 163 were diagnosed with malignant conditions and 74 with non-malignant conditions. Sadly, 50 patients passed away due to late presentation, but 164 were successfully discharged. Of those discharged, 33 were referred to hospices or local palliative care units, 17 to the Uganda Cancer Institute, and 62 with non-malignant conditions returned to their primary care clinics. Unfortunately, 52 patients were unable to access further care due to critical illness, financial limitations, or inadequate infrastructure. Despite these challenges, we recorded 9,117 physical contacts (21% increase from the previous period) and 4,134 telephone consultations, marking a 10% rise. These achievements reflect the tireless commitment of our clinical teams, who continue to provide symptom management, psychosocial guidance, and spiritual support daily.

In pediatric care, 25 children received services, and through our research partnership with the African Palliative Care Association, we utilised the Children’s Palliative Outcome Scale (CPOS) to assess needs and improve care quality. Fifty-four children were enrolled in the study, and 11 were identified as requiring targeted PcERC support. This collaboration has strengthened our ability to detect and address complex pediatric palliative care needs more effectively.

Furthermore, our mentorship model enabled link nurses and generalist providers to care for 420 patients within primary care settings. Of these, 112 were referred to PcERC for specialist support, although 17 sadly passed away before formal consultations could occur, often due to night-time or weekend limitations.

This reporting period has shown encouraging progress in clinical access, caregiver engagement, and pediatric care outcomes. We extend our heartfelt gratitude to GlobalGiving for their continued support, and to our teams at PcERC, Mulago, and Kiruddu Hospitals for their dedication to providing holistic, dignified care to those most in need.

Bringing hope to our patients is a day-to-day task; the pictures below shows some of the play therapy activities pictures one and two below.

Jemimah Social Worker Volunteer sharing experience with a child in the peadiatric oncology ward

ST was in severe pain and so I advised the mother to give a missed dose of morphine as his dose was overdue and I contacted the clinicians who came in for proper pain assessment and management.  Once STs pain was controlled I went to talk further with the mother. She was so positive because I had consulted the team that helped with her child’s pain control. ST’s mother is a 36-year-old single mother of 4 children who had been separated from her husband for 6yrs. She is the bread winner and works as a casual laborer washing clothes and she moves from door to door looking for customers in order to sustain her family. Unfortunately she has lost many of her customers because of ST’s ill health and the situation became so difficult that she decided to take ST’s 3 siblings to their paternal grandparents so that she could continue taking care of ST. We stood with the family providing holistic care such as counselling sessions, providing information, social support, picking medications from the pharmacy, helping ST with school work, enrolling them  for the comfort fund, supporting them with some investigations and connecting them to the hospital nutritionist, and spiritual care. We encouraged her to think strategically for any simple generating income that can support them such as weaving items (mats or buckets) to sell. The support provided helped to improves their wellbeing and the comfort fund assisted them in the buying diapers, passion fruits and milk. 

STs mother said: "I feel like words can't express how much am grateful for the palliative care team, for the support you've always given me and my son. Ever since you came in our lives a lot has changed in me, I now have hope, and at least I can smile knowing there's a special team in Mulago that actually thinks about us and cares too. 

Bernadette PC specialist at Kiruddu caring for JD

JD is a long-standing patient with End Stage Kidney Disease (ESKD) secondary to diabetes and hypertension. He is 32 years old and has been unwell for 3 years He had no attendant during his readmissions as his mother was caring for his younger siblings and they lived upcountry. He used to care for other patients in need, particularly those who were destitute and in the renal ward. Following cessation of dialysis he developed severe fluid overload and ketoacidosis, remained oxygen-dependent and he passed away in March 2025. He appreciated the care provided by the team and called the team members ‘mum’.

EDUCATION ACTIVITIES

We provide comprehensive training and mentorship programs for undergraduate and postgraduate students from various universities / institutions.  For the past 4 months we received undergraduate students for placement from Makerere University, the Islamic University in Uganda, Kyambogo University and Mulago Nursing Training School. We promote knowledge transfer and enhance palliative care skills through clinical modelling and mentorship, ensuring participants develop necessary competencies for integrating and sustaining palliative care in their own setting. Training has been provided as follows:

• Placement students from Makerere University - 68
• Placement students from the Islamic University in Uganda - 50
• Palliative care nursig studentes from Mulago - 17
• Placement stduents from Kyambogo - 2
• Total - 137

RESEARCH

We continue to carry out research to ensure evidence-based practices and advocacy. Our research collaboration include the University of Coimbra, Oslo University, University of Sheffield, APCA and  King‘s College London. We are participating in a pilot study of the PALL Digital Technology.

ADVOCACY AND SUSTAINABILITY

The palliative care unit continues to raise awareness about its services through information sharing and sensitization efforts. 

CHALLENGES FACED BY THE UNIT

1. Caregiver Fatigue and Socioeconomic Strain: Many family caregivers, especially single parents like ST’s mother, are overwhelmed by the dual burden of caregiving and financial instability. This frequently compromises continuity of care at home and affects patients' access to follow-up services.
2. Delayed Referrals and Late Presentation: A significant number of patients arrive at the unit at advanced stages of illness, limiting the effectiveness of holistic palliative interventions and increasing in-hospital mortality.
3. Infrastructure and Transportation Barriers: Approximately 52 discharged patients were unable to access continued care due to the lack of transport, poor road networks, or being too critically ill to travel to referral sites.
4. Limited Financial Support for Basic Needs: While the comfort fund provides essential items like diapers and nutrition support, demand still outpaces availability, especially for long-term patients.

We hope you have enjoyed reading our update! If you have any questions or feedback, please do send us an email at info.pcerc@gmail.com

Best wishes, 

The PcERC/MMPCU team.

On behalf of Palliative care Education and Research Consortium (PcERC), we are pleased to share our progress in providing comprehensive palliative care services to terminally ill patients, including both adults and children. 

Clinical care 

PcERC a centre of excellence offers specialised, evidence-based palliative care for patients and families in need hence improves access to quality care in Mulago and Kiruddu National Referral Hospitals. During the period of  four months: October 2024 – January 2025 the palliative care unit in both National Referral Hospitals (Mulago and Kiruddu) cared for 268 and 528 family care givers. In the past 4 months we cared for 50 children and have been participating in a study implementing the children’s palliative care outcome scale (C-POS). The Link Nurses and primary care workers who are practicing generalist palliative care have taken care of 380 patients and among these 48 were referred to us for specialist care and the rest were treated and discharged appropriately. 

Sarah and Emily's story is a testament to the power of love and resilience 

Emily a bright and cheerful 12-year-old suddenly began experiencing persistent fatigue and weakness over several weeks, prompting her mother to seek medical attention and schedule a hospital visit. Emily says:

“After conducting some tests, the doctor invited us to have a private discussion about the results in his consultation room. The doctor explained that I had leukaemia, a type of cancer that affects the blood”. My mom was so devastated and she started crying, and I could see the fear in her eyes but she knew she had to be strong for me. I began chemotherapy treatment and my mother received detailed information about my care and what to expect. 

At first, I didn't fully understand what was happening. All I knew was that I had to go to hospital for treatment. However the treatment proved to be incredibly challenging. There were times when I felt like giving up, overwhelmed by the intense pain and exhaustion. It seemed like too much to bear, I soon realized that cancer wasn't just a physical battle but also an emotional and spiritual one. There were times when I felt angry, scared, and uncertain about the future. But my mom was always there to help me to stay positive. She reminded me of my strength and assured me that I could get through this. Her encouragement gave me the courage to keep fighting and to never give up. My mom was always there for me. She held my hand through every treatment, hospital stay, and bad day. Her un wavering support made me feel like I wasn't alone, that I had someone who cared about me no matter what”. As she began her treatment, her mother was her primary caregiver. Sarah, Emily’s mother devoted countless hours by her side, holding her hand, gently wiping away her tears, and reassuring her that everything would be okay.

Despite the numerous challenges they faced, Sarah made it a priority to cherish every precious moment with Emily, creating lasting memories amidst the difficulties. Sarah brought joy to Emily by decorating her hospital room, with vibrant balloons and reading her favourite books and stories aloud every day. As Emily's treatment progressed she began experiencing harsh side effects such as hair loss, heartbroken but determined, Sarah knew she had to be strong for her daughter. In a powerful show of solidarity Sarah shaved her own head standing by Emily’s side through every challenge. Emily was touched by her mother's gesture, and this brought both of them even closer. As Sarah and Emily navigated the ups and downs of cancer treatment, they became a beacon of inspiration to everyone around them. Their bond grew stronger with each passing day, and they found joy in life‘s simple pleasures: watching sunsets together, playing with a dolls and cuddling on the couch.

After months of tough treatment, Emily finally went into remission and Sarah was overwhelmed with joy at the news. Although they still had to navigate the aftermath of treatment including frequent doctor's appointments and ongoing medication, Sarah and Emily remained an unbreakable team. Together they faced every challenge that came their way, their bond growing stronger with each passing day. 

As Emily grew stronger and healthier, she began to grasp the full extent of her mother’s sacrifices. She saw the exhaustion in her mother's eyes, the worry etched on her face, and the unconditional love that radiated from her heart. Emily’s new found awareness filled her with gratitude and affection for the selfless woman who had who stood by her side through the darkest of times. 

To express her gratitude, Emily showered her mother with affectionate gesture. She gave her a big hug, drew a heartfelt picture, and whispered “I love you, Mommy. Simple yet powerful expressions of her appreciation for her mother’s unwavering love and support. A reminder that even in the darkest times, love can shine through.

Palliative care at all time: pre- bereavement restores hope

A 16-year-old patient, John, was referred to the palliative care unit with relapsed myeloid leukaemia, which had progressed to the point of paraplegia. Despite his physical limitations, John's mother proudly shared that he was an exceptional student, consistently ranking among the top three in his class. Although his illness forced him to drop out of school in senior one, John's aspirations remained strong, with a dream of becoming a pilot. His mother noted that John was hopeful that a bone transplant would enable him to achieve his goals.

Caring for children with relapsed disease poses significant challenges for healthcare providers, including conducting family meetings and disclosures without causing emotional distress. To address these challenges, the clinical team provides pre-bereavement support and refers complex cases to the palliative care unit for comprehensive palliation. This approach ensures children receive specialised care and support to manage their symptoms, emotional, and psychological distress. Effective care requires a delicate balance of compassion, empathy, and expertise, highlighting the need for specialised training and mentorship for healthcare providers. Patient John 16 years presented with a relapsed myeloid leukaemia, and by the time the palliative care team received his consult he was paraplegic but his mother explained to us that, “John was a very brilliant boy ever ranking in the first 3 positions during exams.”  He had stopped in senior one but his dream was to become a pilot and was hopeful that as soon as his bone transplant is done. 

John and his mother were visibly distressed, revealing that they had lost contact with a potential sponsor for his bone transplant. Despite the oncology team's efforts to secure funding, the advanced stage of John's disease made it impossible to proceed. Initially, John and his mother were unaware of the situation, and they continued to request updates from the oncology team. After a sensitive disclosure, they came to terms with the reality of John's condition. The palliative care team assured them that they would continue to provide supportive care through digital technology, manage treatable symptoms, and be available for any future needs.

The oncologist maintained regular check-ins with John and his mother until his passing last month. Thankfully, John's final days were pain-free, and he can now rest in peace.

Social worker’s experience

Ronald a volunteer for 13 years in Mulago palliative care unit was able to be part of a dedicated team that provides care and support to patient’s facing life limiting illness.  This experience allowed him to gain valuable insight into the challenges and rewards of palliative care, while making meaningful contributions to the lives of individuals who need compassionate support during a difficult time. 

“During my time as a volunteer at Mulago palliative care unit, I have adapted the team’s high standards of professionalism which I now consistently apply when attending to my patients and among the  skills attained is assessing psychosocial and spiritual needs as these can worsen phyiscal needs therefore I have learnt to use good communication skills, being compassionate and empathetic is the most profound aspect of palliative care where a service provider has to be compassionate and empathetic in order to offer excellent emotional support. Palliative care can be emotionally challenging especially when witnessing patients and families going through tough times. Therefore, compassion is very important as it creates a bond between service providers, patients and their families.

Furthermore I work hand in hand with the palliative clinical team, social worker volunteer coordinator and hospital social workers to offer a holistic assessment / management to patients and their families using non-pharmacological measures. Some of the basic activities we offer include emotional support during the course of their treatment as a way of morally boosting, teaching different exercises, feeding patients, collecting medications and play therapy.

Teamwork has improved my skills in assessment / management of patients’ spiritual concerns: praying with patients and refer complex cases to their spiritual leaders. Initially I was so tensed up whenever the clinicians were breaking the bad news to patients and their families now I’m resilient I have learnt how to provide meaningful information to patients and families and I participate in breaking bad news and guiding patients and their families in decision making especially when going through challenging situations (during end of life). Effective communication skills is vital in this setting.  I learnt how to communicate sensitively and respectively with patients and families especially when discharging, when discussing difficult topics such as end of life. I am now perusing my degree in social worker God.

Education activities

We provide comprehensive training and mentorship programmes for undergraduate and postgraduate students from Makerere University and the Islamic University in Uganda. During the 2024-2025 internship rotation, intern doctors, senior house officers, and nurses participated in the programme. Our training and mentorship initiatives equip future healthcare professionals with the necessary palliative care skills and competencies. By working alongside interns and students, we promote knowledge transfer and enhance their abilities, ultimately contributing to the integration and sustainability of palliative care in various healthcare settings. This period we have provided placements for students at Makerere and IUIU, nursing students at Mulago, Post graduate and intern doctors.

Additionally, the unit showed appreciation for its long-stay patients by providing them with edible gifts during Christmas, aiming to bring hope and joy to those in need.

Challenges faced by the unit 

The palliative care unit faces a range of challenges that impact the delivery of quality care and we thank you for your support and in enabling us to provide care to our patients and their families.