What's New

Kerala: an exemplary story in palliative care

Context

• As India struggles with approximately 4% coverage for palliative care unevenly anchored around mega cities, Kerala’s palliative care model is a global exemplar in inclusive care infrastructure.

Defining Palliative care

• Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness.
• It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.
• Palliative care is required for a wide range of diseases. The majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases, cancer, chronic respiratory diseases, AIDS and diabetes.
• Many other conditions may require palliative care, including kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia, congenital anomalies and drug-resistant tuberculosis.

Barriers to palliative care

• Each year an estimated 56.8 million people are in need of palliative care, most of whom live in low- and middle-income countries. For children, 98% of those needing palliative care live in low- and middle-income countries with almost half of them living in Africa.
• National health policies and systems often do not include palliative care at all.
• Training on palliative care for health professionals is often limited or non-existent.
• Lack of awareness among policy-makers, health professionals and the public about what palliative care is, and the benefits it can offer patients and health systems
• Cultural and social barriers, such as beliefs about death and dying;
• Misconceptions about palliative care, such as that it is only for patients with cancer, or for the last weeks of life; and
• Misconceptions that improving access to opioid analgesia will lead to increased substance abuse.

Kerala’s palliative care model

• The palliative care in the state of Kerala is unique, where almost universal access is evident. Kerala is evolved as a unique model in the service delivery of palliative care through the community-based approach.
• The services are provided through community-led projects at free of cost. The services are provided in a home care model.
• Moreover, the services provided are holistic, which cover different aspects of the care of patients and families, including physical care, psychosocial, spiritual, and economic support.
• The palliative care model in practice in the state of Kerala is ideally fit for the resource-poor setting like India due to its cost-effectiveness and community-based approach.
• Voluntary efforts with multidisciplinary teams mostly manage the palliative care services in Kerala.
• The Worldwide Hospice Palliative Care Alliance and WHO attributed community involvement and ownership as the attributes of sustainability of the palliative care model of Kerala.
• As the resources raised from the community itself, the Kerala model is highly sustainable. The resources for the day-to-day functioning of palliative care are mainly mobilized from the community as micro-donation, and the innovations in resource mobilization make the model sustainable.

Conclusion

• Finally, the Kerala story exemplifies how diverse groups of people — across religious, caste, and gender divides — forged solidarities to create care infrastructure. These community organisations are strong reminders of how people organise across differences.