The journey through serious illness is fraught with pain, uncertainty, and overwhelming emotions.
For patients battling incurable diseases, the promise of palliative care offers not only relief from suffering but also a measure of dignity in their final days.
Despite the growing recognition of its importance, the global landscape of palliative care is bleak. Millions of people in low-income countries still lack access to palliative care. According to a 2020 study by Ainur Kagarmanova dubbed, “Palliative care in Uganda: A quantitative descriptive study of key palliative care indicators,” critical gaps remain despite notable progress since the first nationwide palliative care audit in 2009.
Palliative care, which focuses on providing relief from the symptoms of serious illness, is often mistakenly associated solely with pain management. However, it extends far beyond this, encompassing emotional, psychological and spiritual support. The wide array of services offered by accredited facilities includes outreach, home visits, psychosocial support, legal services, bereavement care, and spiritual guidance.
However, due to financial constraints, many of these services are only available for an average of seven months each year as per the study. One of the most compelling cases that highlights the importance of palliative care in Uganda is that of Aidah Nabaweesi of Kisoga, Gomba, a woman who courageously battled cancer for 28 years.
Under the dedicated care of Hospice Africa Uganda, Jjaja Aidah (as she was fondly known) received not only the best available medical treatment but also comprehensive emotional and spiritual support. Her story, a testament to the power of compassion, underscores the dignity that such care provides, both in life and in death.
Palliative care in Uganda began as a mission to offer dignity and comfort to patients, especially those suffering from HIV/Aids and cancer. The groundwork for this movement was laid in 1993 by Dr Anne Merriman and Fazal Mbaraka, who established Hospice Africa Uganda in response to the dire need for affordable and accessible palliative care services.
The vision was clear: to ensure that every individual, regardless of their financial situation, could access pain relief and emotional support during their final days. A key breakthrough came when the government agreed to import powdered morphine, a cost-effective painkiller that had previously been difficult to access. This, along with a simple recipe for making oral morphine, developed by Dr Merriman revolutionized the service.
In 2003, Uganda made another pioneering step when it sanctioned nurses and clinical officers trained by Hospice Africa to prescribe morphine, addressing the shortage of doctors and ensuring that pain relief could reach rural and underserved areas. Today, Hospice Africa Uganda produces morphine locally in a public-private partnership with the government of Uganda, keeping costs low.
Despite these strides, significant barriers remain. Many patients, particularly in rural areas, are unable to afford the cost of care, even when it is available. The ‘Kagarmanova study’ highlights palliative care services are often unavailable for much of the year due to a lack of funding and logistical support.
Healthcare workers also reported challenges related to understaffing, patient overload, and insufficient training in palliative care practices. Moreover, many patients still lack awareness of palliative care and its benefits. This results in unnecessary suffering as individuals with life-limiting illnesses often seek care only at the very end of their illness, when options for relief are limited.
Palliative care must, therefore, be integrated into the healthcare system much earlier in the disease trajectory to ensure better outcomes for patients and families.
Access to palliative care is not just a matter of convenience, it is a human right. This is not just about dying, it is about living well, despite the challenges posed by a life-limiting illness. In the context of Uganda, where diseases such as cancer and HIV/Aids continue to take a heavy toll, palliative care is essential.
It is a basic human right for patients to be able to die with dignity, free from unnecessary pain, surrounded by their loved ones and supported by compassionate caregivers. Yet, this is only possible if government, international organizations, and communities prioritize palliative care as part of a comprehensive healthcare system.
The writer is a journalist and a public health professional.
inarticle} inarticle}