Gathering around a fire has long been a cherished ritual in African culture. Its a moment where communities connect, wisdom is shared, and generations learn from one another. The elders especially grandparents would narrate stories about life, morality, values and cultural heritage. This year, Uganda celebrated World Hospice and Palliative Care Day (WHPCD) on October 11 with a storytelling event at the fireplace, held at Ndere Cultural Centre. The celebrations were led by the Ministry of Health (MoH) in partnership with the Palliative Care Association of Uganda (PCAU). The theme adopted for Uganda was “Committed to Strengthening Palliative Care as a Component for Comprehensive Care in Uganda” which resonated deeply with the goals of raising awareness and building momentum toward accessible, compassionate care for those with life-limiting illnesses.
Attendees from a plethora of organizations gathered around a fireplace to share stories of courage, resilience, and hope. Guided by an artist, the event began with all attendees painting the tree to symbolize life and growth of palliative care services, cultural and environmental connection, remembrance of those that passed away, and deep roots to show continuity of care and community support. Dr. Ruhakana Rugunda, Prime Minister Emeritus and Special Envoy to the President of Uganda graced the event. He highlighted the critical role of compassionate care while reflecting on his involvement in the 2014 WHA resolution as he chaired Committee B. “Palliative care fills a vital gap, ensuring that when the inevitable comes, patients and their families do not face it alone,” he said. His words captured the significance of building a healthcare system that prioritizes dignity and relief from suffering.
The stories shared at the fireplace were moving. Personal stories such as Monica, a mother who cares for her 16-year-old son Moses, living with sickle cell disease, described the impact palliative care has had on her family. Diagnosed at one year old, Moses’ health challenges left Monica feeling helpless when doctors predicted he would not live past four. Yet through palliative care, Monica found hope, discovering that support for both pain management and emotional resilience could transform her journey. “I left my job to care for him full-time and now use my baking skills to earn a living,” Monica shared. Moses, who has survived seizures and several strokes, lives with managed pain with oral liquid morphine. Monica’s story illustrates the strength of unconditional parental love and the importance of palliative care in helping families through life’s hardest challenges.
Other stories were about children taking care of their very sick parents and continuing to dream big as shared by Dr. Kasula Stephen. Dr. Ekiria Kikule the Principal at the Institute of Hospice and Palliative Care in Africa shared the story of Hospice Africa Uganda for the last 31 years since its formation in 1993. Dr. Kikule recalled her early work during the height of the HIV/AIDS crisis in Uganda, where stigma was overwhelming at Kitovu Mobile in Masaka. She provided home care by foot or bicycle, bringing relief and compassion to those facing illness alone. Her work demonstrated the importance of accessible palliative care in upholding human dignity and hope during trying times.
Josephine Namugambe of Rays of Hope Hospice Jinja told the story of how they serve patients in rural areas, integrating cancer screenings for breast and cervical cancer into their care model. Each story shared under the night sky underscored the varied needs palliative care addresses and the courage shown by caregivers and families navigating illness and loss.
At the event, the Executive Director of the Palliative Care Association of Uganda, Mark Donald Mwesiga, delivered a civil society update on the progress of implementing the 2014 World Health Assembly resolution on palliative care. He emphasized the urgent need to increase public awareness, reduce stigma, and expand access to palliative care across Uganda. Mwesiga emphasized the importance of accessibility, quoting Dr. Amandua’s words, “Palliative care should be as available as air.” He described cases where patients travel long distances for treatment, only to pass away upon arrival, which he noted as preventable if palliative care were more widely accessible.
Dr. Charles Olaro the Director Curative Services at the Ministry of Health highlighted Uganda’s commitment to a unified health policy, noting that a fully funded national palliative care strategy would be introduced soon. The session then featured Patricia Batanda from the African Palliative Care Association, who provided a regional perspective on the state of palliative care in Africa. Dr. Hafisa Kasule, the World Health Organization’s Technical Advisor on Non-Communicable Diseases, discussed the WHO Conceptual Model for Implementing Compassionate Care in Palliative Care. She stressed the importance of early diagnosis, pointing out that early integration of palliative care can reduce hospital delays and enhance patient outcomes throughout their care journey.
The guests donned hats to stand in solidarity with children’s palliative care, symbolizing their commitment in raising awareness about the importance of specialized, compassionate care for children experiencing serious health related suffering.
Ahead of World Hospice and Palliative Care Day, a series of impactful events set the stage for awareness and advocacy. The first was a Media Breakfast on October 4, held at the Ministry of Health and led by Dr. Charles Olaro. In his opening remarks, Dr. Olaro emphasized, “We must dismantle the stigma surrounding palliative care and raise public awareness of its benefits.” He accentuated the need for a new understanding of palliative care, not as a service for the end of life or senior age alone, but as an essential, accessible component of healthcare for everyone. “Access to palliative care is everyone’s business,” he noted, “a need you may not fully realize until you or a loved one require it.” During the event, Bulasio, a 90-year-old prostate cancer patient, shared his own experience of receiving palliative care from Hospice Africa Uganda. “My pain is well managed,” he shared. “I took my oral morphine this morning and was able to climb the stairs on my own.” His story highlighted the tangible benefits of palliative care in enhancing quality of life. With over 30 media outlets present, the breakfast fostered a strong commitment to raising awareness about the availability and accessibility of hospice and palliative care services in Uganda.
Climaxing the Celebrations with “Voices for Hospice”
On October 12, the celebrations concluded with the Voices for Hospice event, hosted by Hospice Africa Uganda. Representatives from the Irish Embassy, Nabagereka Foundation, and palliative care advocates gathered to reflect on the journey of palliative care in Uganda. Dr. Stephen Watiti, a long-time advocate and Trustee at the World Hospice and Palliative Care Alliance, shared his personal journey, encouraging others to embrace palliative care as a pathway to dignity and comfort.
Lesson Learnt from the World Hospice and Palliative Care Day 2024 commemorations.
- Developing a National Palliative Care Strategy will offer a framework that guides the comprehensive strengthening of health systems, ensuring palliative care is an integrated, sustainable component of healthcare service delivery across Uganda.
- Promoting Universal Access to Palliative Care Services will be achieved through fostering public health approaches to palliative care, increased public understanding and support for equitable access to palliative care.
- Advancing Palliative Care Training for Health Professionals recognizing the need for all health professionals to receive palliative care training at basic, intermediate, and advanced levels ensuring that they are all equipped to deliver compassionate and effective palliative care.
- Ensuring Access to Essential Medicines and Pain Relief and so there is a need for continued advocacy and systemic reforms to address any obstacles that could affect the supply chain so that pain relief can be available to all in need.
- Use of diverse media channels to continue sharing compelling stories including those from direct beneficiaries of care to share vital information on palliative care, raise awareness and understanding among the public about the significance of palliative care in Uganda.
- Strengthened Networks and Partnerships from the collaborations among various stakeholders in the palliative care field and related sectors.
Uganda’s 2024 World Hospice and Palliative Care Day celebrations reflected the shared commitment to making palliative care accessible to everyone who needs it honoring the spirit of Ubuntu, “let’s move forward together”
This was a great event. Thank you for the great work you are doing to make the end-of-life journey as normal as possible for those in need.
Thank you so much Dr. Kasule Hafisa for your kind words and most importantly for attending the World Hospice and Palliative Care Day commemorations.
We deeply value your support and look forward to further collaborations with WHO to make a lasting impact in palliative care in Uganda.