Healing with empathy

CanSupport ensures that cancer patients have a support system to manage their illness

A doctor once told Harmala Gupta that cancer is like a wild horse. If you're behind it, you could chase it forever. If you're ahead of it, however, you have a fighting chance to tame it. Since the time she was diagnosed with Hodgkin's Disease while studying in Canada in 1987, Gupta has continually raced that wild horse, sometimes ahead, sometimes abreast, but never ever losing sight of it. She survived cancer and returned to India in 1991. "I realised when I returned that most cancers in India were diagnosed too late to be cured," she recalls. Cancer patients and their families suffered not only from the disease, but also lack of information, insensitive medical professionals and lack of palliative options to ease the pain and side effects of treatments. "I remember visiting the Breast Cancer Clinic at All India Institute of Medical Sciences, where women patients were being examined behind half-drawn curtains while other male attendants waited right there," she says. "One of the first things I and a bunch of generous friends did was ensure proper curtains to give women patients much-needed privacy and dignity they deserved."

Gupta founded CanSupport in 1996, with a belief that she could be a positive role model for cancer patients. In the next few years, CanSupport pioneered the concept of palliative home care in India. Studies indicate that patients who receive palliative care throughout their treatment, live longer than those who don't. Yet, overworked Indian doctors often give the concept short shrift. That's where CanSupport steps in. "We like to say it's better to add life to days, than add days to life," says Ambika Rajvanshi, CEO of CanSupport.

To this end, the support group tries to work with patients from the time they are diagnosed, the initial stage they refer to as "breaking of bad news". "We conduct empathy-building workshops with oncologists to help them see the patient, and not just his tumour," says Rajvanshi. The second stage in the course of cancer is treatment. "We operate three out-patient clinics outside NCR's major cancer hospitals to support patients through radiation and chemotherapy," she says. These also function as day-care centres where adults and children can relax with music, yoga and other recreation activities. CanSupport also provides wigs, medical equipment and air mattresses to patients free of cost.

If treatment is unsuccessful, the patients enter what CanSupport staffers refer to as the "end of life" stage."Our flagship palliative home care services are for such patients," explains Rajvanshi. Teams of doctors, nurses and counsellors currently visit 1,800 patients across NCR. Usually, they train a family member to give injections, clean tubes and sterilise dressings. "This way, the patient dies peacefully at home without expensive and pointless medical help," she explains. "This makes the end-of-life a transition from panic to peace and acceptance." Last year, 94 per cent of CanSupport's patients died at home, surrounded by family - freeing up precious hospital beds. Obtaining the licence to dispense morphine has been a step forward in this direction. "India supplies most of the world's morphine, yet cancer patients used to die in agony because of the country's outdated laws," says Gupta. Owing to their efforts, morphine is available in all states of the country to ease the final days of terminally-ill patients.

This is the largest home care programme in India, recognised by the World Health Organization for its efficacy. It is also easily replicable: "We're presently training several teams, including some from the Punjab government and Sher-e-Kashmir hospital in Srinagar, to use our palliative home care model," says Rajvanshi. Home care is quite expensive, though, with each home visit costing Rs 950. CanSupport spent Rs 3.5 crore on home care last year. "We need to expand our reach outside the limits of Delhi because a huge number of cases are coming from the capital's outskirts," says Rajvanshi.

At the end of the day, Gupta and her cohorts have learnt that cancer must be looked at holistically - and that not just the patient but his family, too, needs treatment for it. "We continue to support the family after patients have died, for they too are victims," says Gupta. In many ways, CanSupport demonstrates that while modern medicine might heal the body, no cure is complete without some kindness and empathy to heal the spirit.

Visit www.cansupport.org or their Facebook page for more details. Sign up for their fund-raising walk on January 31 at walkforlifeindia.org
Next up, the story how street vendors across the country are reclaiming the road through a hygienic avenue for a dignified life