Sushama, my wife, was diagnosed with pancreatic cancer when she was 57," says V. Jayaprakasan. This was 2008 and Jayaprakasan was dean of the College of Veterinary and Animal Sciences, Pookot, Kerala. “My wife’s sister had suffered from the same disease in 2005 and had died within a year post diagnosis," he says. “I knew how aggressive this cancer was. We spent the first six months at a cancer hospital trying surgery, chemotherapy and radiation but when the doctors said that nothing more could be done for Sushama, and she had less than a year to live, we moved her to the Trivandrum Institute of Palliative Sciences (TIPS), a palliative care centre. I had also retired by then."

It was not like going to a hospital at all. The staff welcomed Sushama and spoke to her with affection and care. It was like being taken care of by family. “Her pain was well managed with round-the-clock clinical care," recalls Dr Jayaprakasan. As her primary caregiver, he too was given clear instructions on how to change medicines and dosage according to the changes in her symptoms. “But I haven’t told you the most important part," Dr Jayaprakasan says. “The director of the centre actually asked me how I was feeling. It was much needed and I felt like there was a support system available not only for my wife but also for me."

Dr Jayaprakasan’s wife died in January 2009 and in early 2010, he began working with the centre, initially as a volunteer and later as its CEO. He was the CEO from July 2010 till December 2011.

Quality of life

According to the International Association for Hospice and Palliative Care, US: “Palliative care is the care of patients with active, progressive, far-advanced disease, for whom the focus of care is the relief and prevention of suffering and the quality of life." While hospice care is end-of-life care, palliative care is care that can be provided at any stage of a serious illness alongside a curative treatment plan.

Sunil Kumar, deputy director, TIPS, agrees, emphasizing that palliative care is not only for the patient but also for the caregiver. While many people consider palliative care an option for terminally ill patients, “most palliative care centres across India look after patients suffering from all kinds of chronic illnesses and disabilities like paraplegia, neuromuscular diseases, various cancers and HIV/AIDS", says Dr Kumar. At his institute, 60% of the patients are suffering from cancer, the remaining suffer from chronic illnesses.

Dr Kumar says the thing to remember about palliative care is that regardless of the type of disease, or how advanced it may be, there is always something that can be done to improve the quality of life of the patient. Palliative care is a team effort where a doctor, nurse, occupational therapist, psychologist and social worker are all engaged with the patient and the family. A multidimensional
approach is critical because the patient suffers at many levels—there are physical aches and pains, as well as psychological, social, cultural and spiritual aspects. “These are all interrelated and can be addressed after the pain and the physical discomforts are successfully managed," says M.R. Rajagopal, director, TIPS, adding that palliative care is the doctor’s duty, whether the disease is curable or not. Amy Siew, a medical officer in the department of community health at Bangalore Baptist Hospital, agrees: “Most patients I see who are in need of palliative care aren’t even aware that their pain and suffering can be controlled. They have no idea that there is a branch of medicine like this."

Where to go

There are 245 palliative care centres across India listed on the Pallium India website—185 of these are in Kerala alone. Pallium India (palliumindia.org) is a registered charitable trust that works at the national level to provide pain relief and palliative care.

Dr Rajagopal credits the media and the high rate of literacy in Kerala for the large number of palliative care centres in the state. Sanjeev Misra, a former member of the 13th Finance Commission, says: “An added reason for the large number of palliative care centres in Kerala is that the state has a higher percentage of people over the age of 50 as compared with any other state in India. Older people suffer from more chronic diseases and are in greater need of palliative care."

Across the country, the palliative care available is limited. Dr Rajagopal estimates that only 1% of the approximately three million Indians who need such care receive it. And most of the centres that exist are stand-alone ones. Yet palliative care needs to be made an integral part of every hospital, says Dr Siew. Dr Rajagopal adds that getting nursing staff for palliative care too is challenging, the large number of nursing colleges across Kerala notwithstanding.

The Union ministry of health and family welfare, in partnership with the World Health Organization, released a fact sheet in August 2011 that listed the seven most important health issues—palliative care was listed as one of these. Mary Ann Muckaden, professor of radiation oncology at the Tata Memorial Hospital, Mumbai, has recently initiated a one-year fellowship course in palliative medicine in partnership with KEM Hospital, Mumbai, that is open to all medical graduates. A similar course is available at the Institute of Palliative Medicine in Calicut, Kerala, Bangalore Baptist Hospital, Christian Medical College in Vellore and at the Cipla Cancer Palliative Care and Training Centre, in Pune, Maharashtra. She advises that doctors across specialties be made aware of palliative care so that they can then inform their patients. “Patients and their families must know about this kind of care, and should demand it when the need arises," she says.

Sujata Kelkar Shetty, PhD, writes on public health issues and is a research scientist trained at the National Institutes of Health in Bethesda, US.

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Centres of Care

Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi. For more information, write to narbhat@hotmail.com

Shanti Avedna Ashram, Mumbai. For more information, call 022 26427464

Palliative Home Care, Bangalore Baptist Hospital. For more information, visit www.bbh.org.in

Karunashraya—Bangalore Hospice Trust, Bangalore. For more information, visit www.karunashraya.org

Dean Foundation, Anna Nagar (East), Chennai For more information, email deanf@vsnl.com

For more palliative care centres across India, go to the Directory of Palliative Care Services, Palliumindia.org

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