Embracing Compassion: The Imperative Need for Palliative Care for Leprosy Patients

 

Ms Lata (name changed), W/o Mr Rajesh (name changed), was a leprosy affected person with a 50% disability due to leprosy. On 6^th March, 2023, she fell down and fractured her right femur. She was taken to MGM Medical College and Hospital, where she stayed for two days. Though she required surgical intervention, her general condition did not allow her to proceed with the surgery. She was shifted to an old age home as she had no family to support and care for her. At the center, Latha received nutritious diet, basic nursing care and oral pain killers for symptomatic relief. She remained totally bed ridden until 20^th September, 2023. Despite being from the BPL (Below Poverty Line) category and had disability certificate, she was unfortunately not covered under the Ayushman facility or any other health Insurance scheme. Her last rights were performed by individuals from the Leprosy community due to the absence of her family members.

In the vast landscape of healthcare, where advances in medical science constantly redefine our understanding of diseases, one ailment remains entrenched in the shadows, often overlooked and shrouded in stigma: leprosy, also known as Hansen’s disease. Beyond its physical manifestations, leprosy brings with it a complex tapestry of challenges extending far beyond the medical realm. As we delve into the lives of those affected by this ancient malady, it becomes abundantly clear that palliative care is not just a luxury but a fundamental necessity.

Consider the poignant story of Ms. Latha whose journey exemplifies the multifaceted struggles faced by many. With a 50% disability due to leprosy, Latha’s fractured femur became a harsh testament to the intricate interplay of physical, psychological, social, financial, and spiritual challenges that befall leprosy patients, especially in their twilight years.

 

Physical Needs: Leprosy, with its insidious attack on peripheral nerves, often leads to complications such as ulcers and disabilities. Regular wound care and nutritional support are imperative to prevent further disability and disfigurement. The elderly, like Latha, find themselves bedridden due to mobility issues, making them vulnerable to additional health complications.

Psychosocial Needs: The stigma attached to leprosy forces individuals to forsake homes, families, and societal connections. This isolation breeds loneliness, low self-worth, and a fear of the future. The discriminatory laws exacerbate their plight, hindering normal social interactions and contributing to mental health challenges, including substance abuse.

Financial Needs: Leprosy’s impact extends beyond physical and mental realms, delving into the financial challenges faced by its victims. Despite existing social protection schemes, many find themselves unable to secure decent employment due to disability and societal prejudice. The inability to fulfill basic KYC (know your customer) requirements further complicates their access to available financial support services.

Spiritual Needs: The lingering belief that leprosy is a divine curse perpetuates a cycle of guilt and self-blame among such patients. Limited access to true spiritual leaders and religious literature results in misguided efforts to appease perceived divine forces, often at significant personal and financial costs.

In the face of such intricacies, the concept of palliative care emerges as a beacon of hope and compassion. Palliative care does not merely confine itself to the management of physical symptoms but also extends itself to the holistic well-being of individuals facing life-limiting health problems.

Palliative care for leprosy patients involves a comprehensive approach:

1. Physical Support: Addressing wound care, disability management, and age-related health issues at their doorstep, ensuring a dignified quality of life.
2. Psychological Support: Combating stigma through awareness programs, fostering a sense of belonging and providing mental health services to counter the emotional toll of societal isolation.
3. Financial Support: Advocating for inclusive policies that break down barriers to employment, banking, and social protection schemes, ensuring economic stability for leprosy-affected individuals.
4. Spiritual Support: Promoting awareness campaigns to dispel myths surrounding leprosy, facilitating access to true spiritual leaders, and fostering a sense of spiritual well-being.

In advocating for palliative care for leprosy patients, we embark on a journey towards empathy, understanding, and inclusivity. It is a call to action for healthcare providers, policymakers, and society at large to recognize the intricate needs of this marginalized population. By embracing the principles of palliative care, we not only alleviate physical suffering but also restore dignity, amplify quality of life, and usher in a more compassionate era in healthcare.

The time is ripe to weave a narrative that transcends the limitations imposed by disease, allowing individuals like Latha to experience the full spectrum of care they so rightfully deserve. In the embrace of palliative care, we find the means to redefine narratives, dismantle stigma, and build a future where every individual, regardless of their health status, is afforded the respect, support, and compassion they need.

 

Note: This article is a republication from the January edition of the Indian Association of Palliative Care‘s free monthly e-newsletter.