Palliative Care – An Essential Link in TB and HIV Care Continuum

Palliative Care – An Essential Link in TB and HIV Care Continuum

– Mr. Andrew Adeck Omuse, South Sudan

Having tuberculosis can be scary and stressful. It makes the person weaker in body, mind, and emotions. But in this fight, we also  see strong examples of creativity and resilience. One of these stories is about a young mother who had been bedridden and fighting for her life.

Even though TB was hard on her, she found strength in making things by hand. She started weaving mats and fences with simple reeds that grew around the hospital. What started out as a simple task has turned into something that brings joy, peace, and respect. Handcrafting not only kept her mind on something positive, but it also showed that her illness could not  define her abilities or her spirit. Her story is even more moving because she is the mother of a two-year-old girl. Taking care of a young child is very stressful during the early stages of TB, when the risk of infection is highest. But with the right care and treatment, both the mother and the child were kept safe. The little girl’s innocence and the mother’s bravery are symbols of hope today.

Now, as she responds well to treatment, she is able to walk, create beautiful art, and look forward to life beyond the hospital walls. In a few weeks, she will be discharged, as the current TB treatment course takes only four months. Her journey is a powerful reminder that we are always more than our illness or limitations. Attending to the whole person — their creativity, dignity, and humanity — is as important as medical treatment. This beautiful craftwork is not just woven from reeds, but from courage, resilience, and hope.

Among many communicable diseases, those suffering from advanced TB and those with HIV/AIDS will require palliative care. The new Anti-Tubercular Treatment and Highly Acting Anti-Retroviral Therapy have significantly altered the treatment outcomes of these life-threatening infections. With appropriate treatment, these patients tend to live longer. However, the need for palliative care remains as an integral part of their care plan. Patients with advanced TB or HIV/AIDS often suffer from complex co-existing symptoms like pain, nausea, fatigue and shortness of breath. The focus of palliative care here is symptom management. Palliative care also helps in managing side effects of medications.

Additionally, these patient have unmet needs of psychosocial care.  Palliative care for these patients also includes psychological, social, spiritual, and emotional support for  patients, caregivers and family to cope with stigma, psychological and spiritual distress and financial burden . By integrating physical, emotional, and social support, palliative care enhances the overall well-being and daily functioning of individuals living with advanced TB and HIV/AIDS. It promotes comfort, dignity, and a sense of control, helping patients maintain a better quality of life even amid long-term treatment and uncertainty. Through coordinated, patient-centred approaches, palliative care empowers individuals to engage more meaningfully in their relationships, make informed choices about their care, and find relief not just from symptoms but also from the emotional and existential burdens of illness

Integration of palliative care for patients with HIV and TB should be ensured at every point of service delivery, including inpatient wards, mobile clinics, outpatient departments, and community outreach programs. This guarantees that no patient is left behind. Policymakers should be encouraged to create simple regulations that make it easier to obtain and safely use essential pain medications like morphine and other controlled substances for palliative care. Community involvement is very important, and the goal is to give local groups the power to speak up for palliative care and get resources through small, long-term donations. Working with other organisations, like the World Food Programme (WFP), can make nutritional support for patients stronger. There are still a lot of challenges to address,   Many patients still depend on their families for care and support  at home because of widespread poverty and a lack of trained palliative care professionals, especially in Low Income Contries.

The story of this young mother and many others who have TB and HIV remind us that palliative care is an important part of comprehensive care for these illnesses. Beyond medical treatment, it offers comfort, dignity, and hope to those facing prolonged illness and social stigma. Integrating palliative care into all levels of TB and HIV services starting from  hospitals to communities ensures that patients receive holistic support that addresses both their physical symptoms and emotional well-being. Ultimately, true progress in TB and HIV care will be achieved not only by curing disease but also by  nurturing the resilience, creativity, and humanity of those who live with it.