Packages

Like in most low-income or lower middle-income countries, the need for palliative care is greater in India than in the west simply because disease-specific treatment does not reach patients adequately or early enough. 

We follow the same definition of palliative care as outlined by the WHO. But in our context, the phrase “life-threatening” is to be used keeping in mind life in the broader sense of the term and not just existence. 

This means that we include many “life-limiting” diseases like paraplegia that we believe threaten life by limiting it to within 4 walls. In the West, there is a parallel care system that takes care of people with such conditions, and provides physical, social, mental and spiritual support in the home setting; we do not have such a system. We bring them into the fold of Palliative Care.

The available services in most of the country are of unacceptably low quality, most of them failing to satisfy even the minimum essential standards.

(See “Creation of minimum standard tool for palliative care in India and self-evaluation of palliative care programs using it”, Indian Journal of Palliative Care, 2014;20:3; 201-7.)

Psychosocial issues take a backseat in a big way. Spiritual issues and sexuality issues are almost completely unaddressed.

• 99% of the population that needs palliative care are missed. 
• Among the remaining 1% population that do have some palliative care access, the following groups are further marginalised: 
  • Socially:
    • Children
    • Women – even in the state of Kerala where services are far more accessible than in the rest of the country, men access palliative care more than women.
    • The elderly living alone. An India population study in 2014 showed that in Kerala alone, around 1,70,000 people above the age of 60 live alone in single person households. Of these nearly 1,43,000 are women.
    • Geographically remote/ isolated communities
    • Prisoners and their families
    • People with mental health conditions
    • People with disabilities
  • Culturally:
    • People with stigmatising diseases like HIV, leprosy
    • Sex workers
    • LGBTQ communities
    • Migrant populations
    • People with addictions
    • Tribal populations
    • People with Communicable diseases like HIV, Multiple drug resistant tuberculosis 
  • Medically
    • People with chronic pain
    • People with other drug dependence
  • People in humanitarian crisis and natural disasters
  • Paradoxically, the rich. The affluent go to corporate hospitals, most of which have no pain relief programs, no medicines like morphine, which are in the essential medicines list of Government of India or palliative care. Instead they get cruel, inappropriate end of life care and isolation from the family in intensive care units.