Racism and discrimination in healthcare in India are complex issues which are intertwined with several factors such as caste, ethnicity, religion, socioeconomic status, language barriers, regional disparities etc. Social hierarchy, caste, and creed, significantly affect an individual’s life and their relationships, and often illustrate how deeply ingrained societal norms can impact one’s own behaviour and their interactions with their communities. Discriminatory practices rooted primarily in caste and creed further amplify these dynamics, and allow for the marginalising of certain groups within society. The stigmatization of certain diseases and the disparity in access to healthcare facilities in rural and marginalized communities presents an additional layer of challenges to be navigated to ensure equitable access to healthcare. Several times, individuals from lower castes are denied health care services, while those from marginalized groups face unequal treatment due to their ethnicity or regional identity.
A few years ago, a very close friend of mine, a social activist, had to find a donor kidney for his brother for renal transplantation. I noticed that amidst the urgency and despair induced by the situation, my friend’s voice trembled with a different ache. He said, “I think asking for a kidney is useless, as nobody wants to give their kidney to a person from (caste name).” My first reaction was to brush it off thinking it was the frustration talking which was caused due to his brother’s illness. However, as days turned into nights, I began to observe the truth. I realised that his frustration was actually mirroring the broader societal forces of identity, belonging, prejudice, fear and power dynamics, which could possibly affect access to healthcare.
Another instance I would like to share is from almost a decade ago, while I was working as a palliative care community nurse in a rural setup. During one of our homecare visits, I met an old lady, a case of Ca Cervix, lying down on a torn mat outside a place of worship. As we approached her, there was a strong and foul odour in the air. As we got physically close to her, I noticed that she was leaking from her cervix and was covered with houseflies. Her only belonging other than her torn mat was her measly plate which had layers of dried food waste, including a few little worms and some bug-like things. The volunteer from the village told me that despite the patient’s daughter living on the next street, she was unable to care for her aged and sick mother. I immediately went to the daughter’s home to request her to at least feed her mother once per day. I thought that a major problem would be solved if we could arrange for a food kit to be provided to the old lady. To my surprise, the daughter retorted saying “No, I can’t do that. My mother has cancer in her private place. Everybody says that the disease happens to women who are not loyal to their partners. Already because of this disease, I am having a difficult time in my husband’s home. Also, people have told me that this disease is contagious. We are healthy and I don’t want to get infected with cancer.”
It suddenly hit me that being a part of a backward community is not ‘just’ one single problem. It’s a complex mixture of a host of issues such as lack of education, poverty, ignorance, superstitions, belief systems, etc. We did what we could for the old lady and returned. On my journey back, our home care driver told me of many such similar stories, where patients were abandoned by their community, only because they belonged to a particular caste.
Another experience while working in a village where casteism was given too much importance was when our home care team driver was not given a cup of water or allowed to use the wash room ONLY because he belonged to a particular caste. I was both shocked and perplexed.
Over time, I shifted from community palliative care to hospital based palliative care delivery. During this time, I realised that as a hospital based palliative care nurse I needed to probe quite a bit to explore the needs of those patients and their caregivers who were coming from backward communities. Reason being, these people had accepted and the society had normalised that such patients and their caregivers were allowed to only share their pressing needs such as severe pain, breathlessness etc. Even those symptoms which could be easily controlled were not shared with us due to the preset healthcare utilisation norms. To change this, I understood that I needed to spend extra time and make extra efforts to understand the needs of such patients.
Each of these experiences have taught me that addressing such complex issues requires multifaceted and comprehensive strategies to effect a systemic change to promote equity and eliminate discrimination throughout the healthcare system. Supporting anti-discrimination policies and laws, providing cultural competency and implicit bias training for healthcare professionals, patient education and advocacy, increasing access to healthcare in under-served areas, promoting awareness to challenge stereotypes, and empowering marginalised communities are some of the steps that we need to take to walk in this direction. By implementing such strategies, healthcare professionals can work towards creating an inclusive and equitable healthcare environment where all patients and their caregivers receive respectful and high-quality care regardless of one’s caste, race, socioeconomic background, ethnicity, etc.
About the Author:
The Author is a palliative care nurse who has immense experience of working in the rural communities in India.
Note: This article is a republication from the March edition of the Indian Association of Palliative Care‘s free monthly e-newsletter.
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