It Takes a Village to Care for the Dying: Palliative Care Project in India Attempts just That
PUDUCHERRY, India—Kumaphavally, 34, had complete body paralysis from a fall she took during pregnancy eight years ago. For almost seven years, she lived in a small, damp hut, urinating and defecating in the same place until the Institute of Palliative Medicine started a project to care for the terminally and chronically ill in her village last year.
Sivaperumal, a volunteer with the project, and his wife, Sivanthi, part of a 25-person team in the village of Kuruvinatham, took care of Kumaphavally during the last stages of her life, one of twenty patients the team cares for in their village.
Thanks to them, Kumaphavally was clean and cared for when she died on Jan. 26.
The palliative care project was the idea of Dr. Suresh Kumar, the technical advisor to the Institute of Palliative Medicine. It started in 1993 in the state of Kerala to meet the rising needs of the terminally ill who were slipping through the cracks in the medical system and in the community.
“In cases where a cure is not possible, people get automatically rejected by the system,” Kumar said. “There’s a huge need.”
The community Palliative Care Project uses village-based volunteers who donate and raise money as well as contribute the time and heart to take care of patients who cannot be cured.
They deal not only with the medical needs of the patients, but the financial, familial, spiritual, and logistical needs as well.
Kumar says the project involves the community, because illness is a social issue that affects many people, not just the patient and their family.
“They [the volunteers] are not trained with the condition that they should work as volunteers in the project, but it is hoped that … these sensitized and trained people will behave more sensibly, more competently, and more compassionately when facing a situation [of terminal or chronic illness],” he said.
Sivanthi said her and her husband’s work with the project has changed the way her family perceives others.
She brings her children with her when she makes home visits and they help her care for the patients. She said this has instilled a strong value of compassion in her children.
Today, the community-based Palliative Care Project spans across the states of Kerala, Tamil Nadu, Puducherry, and West Bengal, and has roughly 100,000 volunteers.