Battling the Big C – Part III: A million new cases every year, but not enough palliative care centres

Part I | From native villages to big city footpaths: cancer patients struggle to survive

Part II | No official registry, few donors: Platelet availability a hurdle

Doctors have counselled him, explained Aklema should be given timely medication. Hussain has understood, but not accepted the fact. He has to inform his two daughters and Aklema’s family in Rampurhat, a town in West Bengal. “Batana hai ki nahi bacha paya (I have to tell them I could not save her).” Guilt of delayed diagnosis hangs heavy on him, even as he watches a dozen other patients in the tiny ward, all to be gently told soon that their days are numbered.

“We receive about 5,000 patients every year in the palliative department. Our aim is to prepare them for what may happen next and to reduce their pain as much as possible,” says Dr Mary Muckaden, head of palliative care at Tata Memorial Hospital.

Under her department, currently 50,000 patients are registered from across India. Palliative care aims to provide comfort to patients who cannot be cured. They are given medicines to reduce pain, provided psychological, spiritual and social support.

At Tata Memorial Hospital in Mumbai, about 70 per cent adult patients are referred for palliative care after conventional means to treat cancer fail. “In terms of fatalities, pancreatic and oesophagal cancer are hard to treat. They often end up in palliative care. But when we talk about numbers, maximum patients we receive are of head, neck and breast cancer,” Muckaden says.

A blue card the size of a visiting card is held by each such patient at Tata Memorial Hospital. It has their name, file number, and six contact numbers should they need moral or medical support at any time. The process starts with referral from a particular department. The patient is registered, given a blue card, and his condition is assessed by a nursing team. A relative is sent to the counsellor.

“We first understand from the family what they know about treatment, at what stage the patient is,” says counsellor Saroj Lasrado. “There is no sense in wasting more money. There is no cure, but we can give them comfort,” are the standard lines.

But palliative treatment is often harder than anticipated. Spending money knowing it will not save a life is a moral dilemma and an economical challenge for the poor. For six months, ovarian cancer patient Sugandha Jadhav (65) has been in palliative care. Her savings were exhausted in the Rs 40 lakh treatment comprising six chemotherapy cycles. Now, she depends on her Rs 5,000 monthly pension for medicines. “The cancer has spread to her lungs. She is in pain,” says daughter Mangala Jadhav.

Mangala makes monthly rounds from Navi Mumbai to Tata Hospital in Parel even for follow ups regarding palliative care. “There is a local doctor, but it is always good to consult a specialist,” she explains.

A Lancet report of 2014 says that although incidence of cancer is low in India compared with high-income countries, mortality is high, and incidence is projected to rise to 1.7 million individuals in 2035. Where curative treatment fails, palliative treatment steps in. In India, however, there are only 200 palliative centers attending to the massive load of cancer patients. Most are in cities, making access of rural population difficult.

With need for palliative care burgeoning and budgets not growing fast enough, even at Tata Memorial Hospital, the country’s busiest cancer treatment facility, for the 5,000 new patients needing palliative care every year, there are 10 members available in the department.

Nurse Jyoshna Kalasare alone handles home-care of 132 patients in Mumbai. “These patients are very weak and may suffer from different medical problems. We have to keep regular follow up to ease their pain. That is what palliative care is all about,” she says.

She calls all 132 patients once every week. She visits them once every 15 days. “Sometimes, I call patients until 11 pm to ensure they are okay. The patient load keeps on increasing,” she admits.

There are short courses available for palliative care, but very few takers. Says Dr Shrikant Atreya, head of palliative care and medicine at Tata Medical Center, Kolkata, palliative care is often misunderstood as end-of-life-care, instead it starts with cancer treatment. “Knowledge of how to manage patients is still low. It has still not gained momentum as it should have. People are not ready to invest in it.” he says.

His department receives 60 patients every week for palliative care, many referred from Mumbai. Several are from villages in West Bengal. “Rural people do not have access to health care, let alone palliative care,” Atreya says.

Though local doctors may be trained in offering advice regarding palliative care on phone, Indu Devi is apprehensive about taking medical care over phone. Her 25-year-old daughter suffers from breast cancer, she now covers her shaved head with a stole, her breathing has become shallower. “There is no good cancer doctor in Jharkhand,” Indu rues. A month ago, after six unsuccessful chemo cycles failed to stop the cancer from spreading, oncologists gave up. Her daughter has reached last stage, and counselors are now preparing the worried mother for palliative care.

Usually, in less than a week, these patients are taken back home. “If medicines can’t treat them, it should not worsen them,” says oncologist Tushar Vora. For Vora, a paediatric oncologist, decision to refer a patient for palliative care is the most difficult one.

“We are skeptical to admit nothing can be done. A teenager has his full life ahead, and to be left in palliative care with no chances of recovering is not how he expected his life,” Vora says.

Until now, he has had only one 18-year-old, named Shobhit Kaushal, who accepted palliative care with surprising ease. He motivated other such patients, and went on to become a painter for the one year he lived after treatment was stopped for lymphoma, knowing death was coming, but smiling anyway.