Twenty eight-year-old Divya Devi placed her hands on her bloated belly, closed her eyes, and leaned her head back against a wall. A black hairband held her thinning hair together. She breathed heavily through her mouth and looked exhausted. Devi was one of the many patients biding their time in the packed waiting room of the palliative care center inside the All India Institute of Medical Sciences in New Delhi on that September morning. Those who could, sat. The others lay down. Almost all of them were terminally ill with cancer. Devi had breast cancer that had spread into her liver.
Devi’s husband, Tarun Kathuria, was standing in a corner. A few days before this visit, Devi’s oncologist told Kathuria that Devi might live just for a week or two and referred her to the palliative care center. That morning, the couple left their two-year-old daughter, Riddhima, with neighbours in Dwarka in west Delhi before coming to the centre.
Like Devi, most patients are referred for palliative care when all treatments fail and the patient is terminally ill. “That’s a wrong approach,” said Sachidanand Jee Bharati, assistant professor of palliative medicine at AIIMS.
Palliative care is specialised medical care to alleviate pain and improve the quality of life of patients with life-threatening medical conditions. Palliative care focuses on symptoms and not on the causeor cure of the ailment. Also called comfort care or symptom management, it involves psychological, emotional and spiritual support to patients and their families. According to World Health Organisation, palliative care should begin early in the course of treatment of a life-threatening disease and continue with the treatment. “It is best to start it with the diagnosis of disease,” said Bharati.
Research shows that cancer patients who receive palliative care with treatment live longer than those who are just treated medically. More than 80 percent of cancer patients in India receive their diagnosis only when their cancers have reached Stages III and IV. “Many of them need emotional counseling because they slip into depression,” said Bharati.
According to Devi Vijay, assistant professor at Indian Institute of Management Calcutta who has studied palliative care, a patient could have a better quality of life for a longer duration – six months or more – if palliative care begins before he becomes terminally ill..“You denied the patient quality of life for those months,” said Vijay. According to estimates about six million people in India need palliative care every year.
The divide in medical approach
When Devi’s turn at AIIMS’ palliative centre came, she walked slowly, holding on to her husband. She told Dr Mahima Gupta who attended to her that she was in severe pain, that she slept a lot, that she did not like to eat food or take medicines. When Gupta asked her if she had a child, Devi put her head in her hands and cried. Gupta consoled Devi, increased her dose of Tramadol, a pain reliever, and asked the couple to return a week later.
Palliative care doctors like Gupta and Bharati, with a long roster of patients, can spend only a few minutes with each. The AIIMS center receives between 80 and 90 patients everyday. “During those five to ten minutes, our priority is to relieve the patient of disease symptoms like pain and make them understand the stage of their disease,” said Bharati.
Surgical oncologist MD Ray believes that he can provide his patients emotional support during his regular consultations. “Only a few minutes are enough,” he said. Ray and other oncologist see palliative care differently from doctors like Bharati and Gupta. Ray refers his patients for palliative care only when their disease cannot be cured. “It is a kind of end-of-life care,” said Ray.
When asked should it begin with the diagnosis of the disease, Ray said, “No, no. Not with the diagnosis of the disease. If you can cure the patient why suggest palliative care.”
Shyam Aggarwal, oncologist at Delhi’s Sir Ganga Ram Hospital echoes Ray but also point to the possible impracticality of having earlier palliative care when there is no infrastructure other than a few hospices in Delhi and other states. “Where would you refer the patient?” asked Aggarwal. “It is bookish and far from reality to say palliative care should begin with diagnosis of the disease. It is a thing of affluent societies.”
Given the disease burden, poverty and population of the country, many patients don’t even get access to quality cures, he added.
The views of Ray and Aggarwal fit in with the initial findings of ongoing research by Sanghamitra Bora, a doctor in Kolkata who is studying why doctors who treat chronic diseases refer their patients for palliative care. Bora is baffled that most doctors she interviewed refer their patients for palliative care when they are terminally ill. “Doctor’s don’t want to let go of their patients,” she said, recounting how one asked her why she would offer home care to his patient. According to Bora, the oncologist said, “He is under my treatment. I will take care.”
Bora also observed that doctors misunderstand and mistrust palliative care. “They think that it is just about holding hands and crying with the patient.” Palliative care involves talking to the patient about their goals and preferences. However, research doesn’t show that patient’s preferences are adequately met.
“Unfortunately medical practice in India is disease based, not person based,” said Bharati.
Missing from the curriculum
Parmod Kumar Julka, former dean and professor of oncology at AIIMS believes that doctors delay references to palliative care because they have never been taught about its benefits. “That is why they don’t have a clear idea about what is it and when it should begin,” he said. “It is not entirely their fault.” The Medical Council of India accepted palliative care as a medical specialty only in 2010 and two years later announced a post graduate course in Tata Memorial Hospital in Mumbai, and in AIIMS this year. However, palliative care is not taught as a subject during MBBS education as many suggest it should be.
“This will orient students toward this medical specialty,” says MR Rajagopal, director of the World Health Organisation collaborating Center for Policy and Training on access to pain relief “Today a medical student passes MBBS without learning how to properly assess or manage pain.”
In 2014, Rajagopal and other experts designed a curriculum for undergraduate medical and nursing courses but the Medical Council of India is still to consider it.
The health ministry designed National Palliative Care Strategy in 2012 to be implemented in the five year plan ending 2017 to create basic infrastructure for palliative care in India. However, the strategy was not funded. So, the ministry created a flexi pool and asked the states to submit a palliative care plan to avail up to Rs 48 lakhs to set up ten-bed palliative care centers in their district hospitals. Only a few states like Kerala, Tamil Nadu, and Maharashtra stepped up to the plan.
“States aren’t asking for money, what would you do?” asked Jagdish Prasad, Director General of Health Services in India. “Big states like Uttar Pradesh, Madhya Pradesh, Gujarat have not asked for any funds.”
Rajagopal says that there is no monitoring mechanism to track if the states that took funds for palliative care are using it for the same. Kerala, with its palliative care policy and unique community led palliative care system, has shown remarkable success in palliative care. However, different regions would need different palliative care models given the geography, culture, facilities in those regions, says Vijay.
Back in Delhi, the Devi’s tryst will palliative care did not last long. The day she went to AIIMS, palliative counselors suggested that she be admitted into a hospice, where nurses continued to make her comfortable. A few days later, around 1pm she began to vomit blood. Her husband rushed to the hospice but she was dead by the time he got there.