I recently had the privilege of visiting Chetna, a community health and development project serving two hundred villages in a poor, rural state of South Asia. Many of Chetna’s first projects focused on intervention in early life – mother and child health, literacy, and income generation programs for women needing to support their young families. After decades of work in these areas, they’re now moving to focus on people facing the end of their lives - offering support and advice to them and their families. Chetna has begun working to provide palliative care training.
As you might imagine, traveling with Chetna’s teams as they advise on palliative care issues is frequently emotional. On one visit, we cried together with the family of a patient who had just died. In another home, we sang and prayed with a family of six children who had recently lost their father to cancer. Mourning together is an important part of ministering to these families.
The lack of information available to families and communities about the diseases their loved ones are dying from means that people often react out of fear and ignorance. We heard of family members leaving their loved ones to die alone, barbers refusing to serve people, and community members who cross the road to avoid getting too close to someone - all because they think they will “catch” cancer if they get too close. We also heard of people isolating themselves from their community, hiding away in their houses and failing to seek treatment, ashamed because they think their sickness is a consequence of some sin, or concerned that their illness will affect their children’s marriage prospects. These reactions to diseases like cancer are far too common.
However, I also heard stories of hope and the power of education. I listened as Chetna discussed a range of non-communicable diseases in a community awareness program. I had chai with a village leader and listened as he spoke of his appreciation to the hospital for referring his wife to a cancer hospital early enough for her cancer to be treated. I met people and families strengthened by the hope that Jesus would receive them when they die. I heard stories of sacrifice - like the eldest child who gave up his plans to study in a far off city because he knew his mother, brothers and sisters would need him to be close by after the death of his father.
Less than 1% of people in India have access to palliative care which seeks to provide quality of life by relieving the suffering associated with dying.
I met Ruksana after visiting the home of her uncle and aunt. Her uncle has mouth cancer, the most common form of cancer in India, accounting for 1 in 4 cancers. Overnight her husband had rushed her uncle to the nearest cancer hospital because his wound had begun to bleed terribly.
As we chatted, Ruksana explained that her mother had been one of the first beneficiaries of the Chetna’s community development projects. 16 years ago, her mother was enrolled in one of the first adult literacy groups. Upon completion she was accepted as a student in one of the first income generation projects run by Chetna - a sewing class. Her mother died before completing the course and Ruksana was invited to take her place. Ruksana had to complete the literacy program first. She did so successfully.
She also graduated from the sewing class. When her father found out he was terminally ill, he determined he would arrange her marriage before he died. After all, both of her sisters were married and now living with their in-laws; there would be nobody to take care of Ruksana. Ruksana was married at the age of 12. Shortly after, her father died. The skills she learned allowed Ruksana to earn a small income to help support herself, her husband and, later, her children. She never took for granted the skills she had been taught, deciding that she would teach other girls what she had learnt.
Her gratitude, however, extends beyond that. She is thankful for the gift of love given to her by her aunt and uncle, who cared for her after the death of her parents. Now, Ruksana and her husband do what they can to care for her uncle in his sickness, supported by Chetna staff who give them skills and encouragement in providing end-of-life care for her uncle. Ruksana vows that she will not abandon her aunt as she comes to terms with life as a widow.
Chetna’s long involvement in lives and communities like Ruksana’s gives them the connection, trust, and compassion needed to enter the grief, loss, and stigma that surround death in the communities they serve.