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Understanding the barriers and stigmas attached to palliative care for cancer in India

Palliative care, an integral part of cancer treatment worldwide, is often misunderstood and underutilized in India. Designed to improve the quality of life for patients facing serious illnesses, palliative care addresses not just physical symptoms but also emotional, social, and spiritual concerns. However, in India, cultural, social, and systemic barriers have limited its reach and effectiveness.

What is palliative care, and its importance?

Palliative care is not synonymous with end-of-life care. While it includes support for terminal patients, it is also beneficial at any stage of a serious illness. For cancer patients, it offers pain management, emotional support, and guidance to navigate the complexities of their condition and treatment.

Palliative care is even recognized as a human right. It improves not only the patient’s quality of life but also provides essential support to caregivers. Yet, in India, many remain unaware of its benefits or avoid it altogether due to misconceptions.

Barriers to palliative care in India

Despite its proven advantages, several barriers prevent the widespread adoption of palliative care in India:

• Lack of Awareness: Many patients and families are unaware of palliative care and its benefits. Even among healthcare professionals, there is limited understanding of how and when to introduce palliative care into a treatment plan.
• Social Stigma: Palliative care is often understood to be a ‘giving up’ of sorts on treatment. Families may feel it reflects a loss of hope or inadequate effort to save the patient. Cancer itself carries a stigma in India, with patients often isolated or blamed for their condition. Adding palliative care to the mix can deepen this isolation.
• Misconceptions About Palliative Care: Many believe palliative care is only for the final stages of life, associating it with death rather than comfort and support. There is also a widespread misconception that opting for palliative care means discontinuing curative treatment.
• Inadequate Healthcare Infrastructure: India’s healthcare system is stretched thin, with a significant urban-rural divide. Most palliative care services are concentrated in urban centres, leaving rural patients underserved. Limited availability of pain-relief medication, particularly opioids, due to regulatory restrictions further hampers effective care.
• Financial Constraints: Many families prioritize curative treatment, often exhausting their financial resources before considering palliative care. The cost of travel to urban centres for palliative services adds another burden for rural patients.
• Emotional and Psychological Barriers: Families often struggle with accepting the reality of a terminal illness, leading to delays in seeking palliative care. Patients themselves may feel they are a burden, resisting the idea of receiving specialized care.

Breaking the stigma: Steps toward change

Addressing the barriers and stigma surrounding palliative care in India requires a multi-pronged approach involving awareness, education, policy reforms, and community involvement, including public awareness campaigns, training of health care professionals, expanding medical infrastructure in rural areas, implementing policies at the government level to encourage palliative care and normalising the discussions about palliative care by involving leaders at the grass root level.

A shift in perspective

Palliative care is not about giving up; it’s about giving patients and their families the tools to navigate an incredibly challenging time with dignity and support. It is a compassionate approach to care that recognizes the human side of healthcare.

In India, where cultural norms and systemic barriers often overshadow the benefits of palliative care, the need for awareness and change has never been greater. By addressing the barriers and breaking the stigma, we can ensure that every cancer patient in India has access to the care they deserve—care that prioritizes their comfort, quality of life, and emotional well-being.

Compassionate care isn’t an option; it’s a necessity. Let’s work together to make palliative care a fundamental part of cancer treatment in India.

Dr. Kunal N. Jobanputra MD DM ECMO
Consultant Cancer Physician
MOC Cancer Care & Research Centre, Mahim.