CanSupport Provides Free Palliative Care In Delhi-NCR And Several Other Cities
Saptami Saha came to Delhi from Malda because her husband Lakshman had an eye infection.
While caring for her husband, Saptami’s stomach started to hurt. A biopsy in AIIMS showed she had Stage 3 cervical cancer. Her stomach was filled with fluid. She needed chemotherapy and surgery. Lakshman, who was struggling with an eye infection, cared for his wife with one good eye. He took a loan of Rs 1 lakh. Saptami became frailer, vomited frequently. Her hair fell off in clumps. She had rashes all over.
Lakshman remained hopeful. “Can anything worse happen?” he asked.
Help arrived in the shape of CanSupport, a Delhi-based non-profit that runs India’s largest home-based palliative care programme for free.
For the Sahas, who lived on Lakshman’s earning as an autorickshaw driver, it was the best thing in worst of times. Their professional team of a nurse and a counsellor, aided by a doctor and social worker, gave them 360-degree attention, which is rare and remarkable for cancerpatients in India.
CanSupport worked through the pandemic, its staff masking, sanitising, but getting on with it. CanSupport’s founder Harmala Gupta knows what palliative care means to a patient going through excruciating pain. In 1996, her own early brush with Hodgkins lymphoma had taught her about it.
Death is a fact of life, she said. “Modern medicine, though, is obsessively focused on beating back disease for as long as possible. It sees death as a failure.”
Many patients spend their last days in a cold, impersonal intensive care unit, attached to monitors, treated as malfunctioning machines. “The reluctance to face death is part of this heroic, muscular model of medicine,” Gupta said. “It has also become very lucrative. Being in the ICU can jack up charges. People stay on ventilators, and lose fortunes,” she said. “I was the person attached to the tumour rather than the other way around. Noone was looking at me,” Gupta said, recalling her struggle with Hodgkins lymphoma.
CanSupport’s palliative care looks at the person, rather than the disease. In a sense, the service is a compassionate death-support system when the life support gives up. Rather than curing a body, CanSupport seeks to meet the physical, psychological, spiritual and social needs of a patient staring at death in the face.
In India, over a million new cancer cases are detected every year. In 2018, nearly 8 lakh people died of cancer. Most cases in advanced stages report debilitating pain.
They should not have to suffer pain when there is medication that can provide relief, Gupta said. “Nearly 2.5 million children worldwide die in need of palliative care and pain relief and more than 90% of paediatric deaths associated with serious health-related suffering is avoidable,” a Lancet study says.
CanSupport, which has 30 teams in Delhi and the NCR and works in Meerut, Bathinda and Amritsar, provides a support system for those who are dying and for those who care for them at home.
Each team meets several patients every day. Some patients are of higher priority because of their medical situation. Others get weekly or monthly visits. CanSupport is also on call to guide people in a panic or an emergency.
They explain to a patient’s carer how to change wound dressings or the right way to turn a person around for minimal discomfort. They provide diapers, air-mattresses and backrests, which are all donations. While visiting a bed-ridden patient moaning in pain, while the doctor notes the history and prescribes medicines, counsellor Ashish Samuel encourages her by promising that help is close at hand.
Nobody is uptight and pious. Samuel usually keeps it light, joking and chatting as well as answering practical questions related to eating and sleeping. In a situation rife with anxiety and denial, the home-care team brings empathy and compassion -- what has been described as “looking with fresh and unfrightened eyes”.
Cancer is not without its stigma in many places. CanSupport is often asked to park its van at a distance so that neighbours do not get a whiff of the disease.
The family, on the other hand, goes through its own trauma. They are caught in a daily cycle of feeding, medication, changing dressings or diapers, massaging or dealing with mood swings and rage.
A cancer patient’s family lives from one health event to another. It is hard for them to deal with their own feelings or be present for the person they love.
In one home, a bedridden patient pleaded with the CanSupport team to take her with them, and claimed that her husband used to hit her in impatience.
The team forms close bonds with both the patient and the family. “This is the most exhausting, yet the most sustaining work,” Manju, the nurse in one of the teams who has worked at CanSupport for five years out of her career of over two decades, says. Manju finds this experience far more meaningful than the impersonal work in a hospital.
The CanSupport team even provides rations, pushcarts and sewing machines to those in straitened situations.
In Nizamuddin Basti in New Delhi, the team takes food supplies to an elderly woman who lives with her sister and prods her to go for her next round of radiation. In a shanty near Sarai Kale Khan, where they go to meet an eight-year-old who has osteosarcoma, Samuel counsels her bitterly fighting parents.
These are the lucky ones. While Kerala has a different community-based model of palliative care, most of India is under- served when it comes to a death-support system.
