Published on: December 30, 2024

Anjali Krishnan R, Officer – Projects and Data, Pallium India, writes:

In December 2024, I got the opportunity to visit the remote outskirts of Udupi district in Karnataka, where I met a family whose faces and life story made an indelible mark on my mind.

Three of us from Pallium India, along with five community leaders and activists including local self-government officials, visited a household tucked away from the main road, nestled in a downhill terrain. The surroundings were enveloped in a lush greenery that soothed both the eyes and the mind. The quiet tranquillity of nature, with its vivid shades of green, seemed to promise peace.

As we stepped inside, the context shifted dramatically, and the serenity outside was replaced by a profound stillness within the house. We found two children suffering from Muscular Dystrophy, lying on separate beds positioned across from one another, facing each other. Standing beside them were their elderly parents – the father near his son’s bed and mother beside her daughter’s. It was a sight that spoke volumes: love, care, and an overwhelming sense of helplessness all intertwined. The children’s caregivers, their elderly parents, provided care in any way they could, despite their own physical limitations and emotional exhaustion. The weight of responsibility was evident on their faces as they tended to their children with unwavering love.

Yet, beneath their devotion, there was an undeniable sense of fear in their words – a fear of the unknown, of what the future might hold for their family. The parents’ voices were thick with helplessness as they expressed the uncertainty that haunted them: “Who will take care of our children after our death?” In a community with limited resources and departmental convergence, community volunteer system, this question is more than just a logistical concern – it is a deep existential anxiety that strikes at the core of what it means to be a caregiver, a parent, and a human being.

The initial silence, followed by a smile, and then the daughter’s words, “a burden to my family,” echoed a deep, unspoken fear (loss of spiritual as well as psychological well-being along with physical well-being). I realized the extreme pain of individuals living with serious health related suffering (SHS) and the immense emotional strain it takes on both the individual and their loved ones.

The scene I witnessed in that household made me reflect on the complex intersection of “Agency, Structure, and Institution” in institutional theory. As a Physiotherapist, Public health professional and Palliative care activist, moreover a human being, I found myself contemplating the roles of personal agency and the critical need for institutional support in navigating such challenges. The overwhelming sense of helplessness, isolation, and existential anxiety reflected in their situation was a powerful reminder of how deeply entwined personal agency and institutional support are in shaping one’s identity and emotional well-being.

When a person is physically incapacitated by a debilitating disease like Muscular Dystrophy, their ability to act independently is severely limited. In the case of these children, their agency was stripped away by the very nature of their illness, leaving them even more vulnerable. Though the two children have wheelchairs, their home – a modest three-room structure – is not wheelchair-friendly. The toilet is located outside, making it impossible for the children to reach it independently, not able to use the available wheelchair, so that not able to do the daily routines and not able to enjoy the beauty of nature surrounding their home. However, there remains a significant opportunity to foster their independence and alleviate the burden on their elderly caregivers. With simple, need-based, community-driven interventions, it is possible to improve their quality of life. By utilizing the available institutional mechanisms (decentralised governance, health system, self-help groups and other social support systems along with integrating a palliative care approach can empowers both the children and their caregivers, offering a chance to relieve their suffering and enhance their dignity. Integrating these resources can significantly improve their quality of life, offering them the dignity they deserve while also relieving their physical and emotional suffering.

This experience served as a powerful reminder of the need for person-centred and palliative care approaches that uphold the rights and dignity of individuals with serious health-related suffering, and those who care for them. It highlighted the deep intersection between agency, structure, and institution in shaping identity, well-being, and the human experience. At the core of this is the fundamental right to dignity – something that should never be stripped away, no matter the circumstances. We must continue to seek solutions that honor the agency of those suffering from chronic illness while ensuring that institutions and support systems are in place to meet their needs.

The question that lingers from this experience is not just about who will care for those in need, but how we, as a society, can create the conditions for all individuals to live with dignity, autonomy, and support.