Uganda is currently one of three African countries (including South Africa and Tanzania) to have palliative care formally integrated into its healthcare policies. The idea of hospice and palliation is relatively new worldwide, with it only becoming an officially recognized specialty in the 1980s. The first hospice in Uganda was started in the 1990s (following Tanzania and Kenya) and has since seen impressive growth around the country and increased integration into healthcare delivery. The Palliative Care Unit at Mulago was started six years ago, and has made impressive strides for a relatively unknown and new specialty.
The palliative care team, comprised of nurses and two doctors, sees patients from all over the hospital referred for consultation. From this single service, I felt like I had a unique pulse on the various pathology throughout the hospital and the chance to peek deeper into the lives of these patients and understand how they relate to their diagnosis. Because at the core of it all, it is about the patient’s quality of life and sense of dignity.
The palliative care team not only worked on symptom management, pain control and psychosocial support, it filled in those layers of communication and advocacy easily lost in a hospital working beyond capacity at all times. The team helped with clinical diagnosis and treatment plans of complex patients. They also helped obtain medications and lab work when needed by going directly to the pharmacy, or coordinating volunteers for those patients without attendants. They helped ensure that the clinical plan was carried out, and that the patient and family were part of the decision process. We explained to patients what it meant to have metastatic disease and what the future may look like – and that even if chemotherapy is no longer helpful they have choices and we have medicines to help minimize their pain. As treatment options run out, it doesn’t mean that care does as well. For many, it was the first time they’ve heard that their disease is not reversible. Most of the time, we just listened.
Mulago seems an unlikely place to find dignity. And on those longest days, it seems every patient and staff member could benefit from a touch of palliation. I think that many of the patients we visited did find some peace. Whether they returned home on hospice or remained in the hospital, that additional layer of support was the beginning of dignity- a service that truly should be universally available to all patients. There are so many parts of what we do every day that are resource dependent, and can become quite frustrating if that’s all we focus on. It is amazing though, what can be achieved with limited resources, and how remarkably uplifting and life-prolonging it can be.