Tata Memorial Centre, India’s premiere hospital for cancer treatment, is in the process of setting up five centres for palliative care to treat children with non-cancerous diseases. The programme indicates a significant departure from how palliative care is perceived and provided in India, where it is mostly associated with alleviating pain and symptoms for people who are dying.

“It is incorrect to think that palliative care is end-of-life care,” said Dr Pradnya Talawadekar, project coordinator of children’s palliative care at Tata Memorial Centre. “Children with chronic conditions, like cerebral palsy and mental retardation, may see a significant improvement in the quality of life if they receive palliative care.”

Palliative care is the branch of medicine that deals with relieving pain alleviating symptoms without addressing the cause of a disease. The goal here is to make a person more comfortable and improve his or quality of life.

Many doctors in India are now advocating a shift from providing palliative care when all other treatments for recovery have been exhausted to providing palliative care as soon as a disease is diagnosed.

“The problem is that doctors think that palliative care practitioners are there to pour Ganga jal in the mouth of the patient,” said Dr Vineeta Sharma, head of palliative care department at Bhaktivedanta Hospital in Mira road, referring to the Hindu ritual of giving a dying person water from the Ganga river to ensure his salvation. “Doctors would only refer the patients to me when they would have a few hours to live.”

Pheroza Bilimoria who runs Palcare, a palliative care facility in Mumbai, said that most of her patients are admitted when their disease at already at advanced stages. “Affluent patients try every possible treatment before considering palliative care,” said Bilimoria. “About 49% of patients die within the first two months of enrolling as they are already in a very advanced stage of the disease.”

A patient receiving palliative care at home. (Photo: The Jimmy S Bilimoria Foundation)

But this is what Tata Memorial Centre has set out to change.

“We want to introduce palliative care early so that patients can receive holistic care,” said Dr Jayita Deodhar, who is currently in charge of the palliative care department at the hospital. “Patients as well as doctors have to understand that palliative care has benefits in non-cancerous conditions such as thalassemia and HIV.”

Early palliative care

Dr Geeta Joshi, chief executive officer of the Community Oncology Institute attached to the Gujarat Cancer Research Institute, remembers treating a 62-year-old man from Ahmedabad with recurring buccal mucosa – lining of the mouth – cancer. “He survived for almost two years on palliative care and was almost pain-free,” she said. “Palliative care helps in symptom control, which helps improve adherence [to therapeutic treatment] and reduces dropout rate which will improve the overall prognosis of the patient.”

Joshi’s observations are backed by plenty of recent research on the benefits of starting palliative treatments. For example, a study published in the New England Journal of Medicine in 2010 showed that integrating palliative care early with standard oncological care in patients with metastatic non–small-cell lung cancer resulted in increased survival by two months and improvements in quality of life and mood.

A team of doctors at Tata Memorial Centre are now looking at the benefits of introducing early palliative care for patients with head and neck cancer.

Early palliative treatment is especially important for cancer patients, pointed out Dr Shrikant Atreya, a palliative care consultant at Tata Memorial Centre in Kolkata. “Chemotherapy leads to side effects which need to be addressed,” he said. “Oncologists have enough on their plate. We need a separate specialty for the management of the pain and psychological impact of the treatments.”

Joshi and her colleagues from the gynaecological department of the Gujarat Cancer Research Institute are devising a project to understand the benefits of early palliative care in women with cervical and ovarian cancers.

A beginning

There are problems with starting palliative treatment early, especially in India. Most cancer patients are diagnosed only when their diseases are in an advanced stage and introducing palliative care early is a challenge. At the same time, there is a rise in the demand for palliative care, said Joshi. She once used to get five patients a day. “Now, I see more than 100 patients a day. But, more people need it and we have to reach them.”

India has a national programme for palliative care which is a state sponsored scheme with funding under the National Health Mission. For example, Gujarat has been sanctioned Rs 35 lakh to develop infrastructure and train staff for palliative care in six districts of the state, Joshi said. Dr Gayatri Palat from MJN Cancer Hospital in Hyderabad said that the Telangana health insurance scheme covers palliative care. “Patients get free medicines and other support related to hospitalisations through the insurance,” she said.

But, implementation is not uniform across the country. In Maharashtra, many trained palliative care staff have left these jobs as they had not been paid for almost eight months. A Maharashtra’s health department official said, “There was no funding and we could not pay them. Now, we are planning to revive the program by training and recruiting new staff.”

Deodhar estimates that less than 1% of patients who need of palliative care actually get it. “There is only one palliative care physician for every one million patients,” said Deodhar.

The biggest challenge comes from within the medical community as doctors fear losing patients, if they refer them to palliative care. Another challenge is acceptance of providing palliative for children. “Palliative care improves quality of life of both the patient and the family,” said Talawadekar. “Teaching parents to dress wounds can help the child physically, mentally and emotionally.”