Palliative care looks for quality life

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In 1992, Kishore Rao left behind a successful corporate job to herald a new dawn in palliative care. He wanted to provide the care completely free of charge. To begin with, he had only well-meaning hope with him.

His interest in palliative care, in fact, began a few years before he quit a successful career.

Rao, who was a part of the Governing Council of Kidwai Memorial Institute at the time, was also creating awareness on cancer, organising screening camps and helping the terminally ill.

The decision to leave his job came after he was moved by the condition of terminally ill patients in Kidwai who had nowhere to go after they were discharged.

“Those days (1986), I was seeing that only the curative part of cancer was being taken care of, there was nobody working for the social part,” Rao, Chairman, Indian Cancer Society (ICS) and Karunashraya, recollects.

"I wrote to ICS asking if I could start a branch here to create awareness about the disease. In 1986, they welcomed it. I roped in more like-minded people and we floated a public charitable trust (Bangalore Hospice Trust) in 1994. The government leased out land on a long lease basis for the hospice, Karunashraya, to be built upon,” he says.

“I started with just Rs 3,000 in my pocket," recollects Rao.

Today, in spite of the efforts of well-meaning citizens like Rao, palliative care -- which WHO describes as a “holistic approach to improve the quality of life of patients and their families who have a life-threatening illness’’-- is still unknown to a large majority of Indians.

In spite of being a medical specialty, economic factors, lack of professional caregivers, inaccessibility and limited awareness stop it from living it to its full potential.

“Palliative care has not been integrated into our healthcare system yet,” informs Rao.

“There are organisations which are making it popular and along the route, palliative care is also receiving attention. But in itself, the awareness has not yet spread although we have been doing this for 20 years.”

“Most doctors (apart from palliative physicians) are aware of palliative care now and have realised that this specialty can complement their own curative care efforts,” he says.

“We have been examining where the patients and families heard about us, and over 70 per cent said it was through word-of-mouth. Also, through articles written about palliative care,” he says.

Meanwhile, questions are often raised whether health professionals in India are educated about the importance of palliative care and how one can get educated in this specialty.

“There are diploma courses and fellowship courses in palliative care but at present, there are just four centers in India offering the course,” informs Dr Somashekhar SP, chairman and HoD, surgical oncology, Manipal Hospitals.

“Palliative care should be an organised health service. At present, there is a huge deficit in professionals trained in palliative care. The ratio is 1:10,000. In the present scenario, it's the doctors and nurses who are providing the care in the midst of their busy schedule,” adds Dr Somashekhar.

“Palliative care volunteers also include cancer survivors. But they should be headed by a palliative care physician,” he says.

It is also time to keep some misconceptions at bay about what actually palliative care is and which is most often confused with hospice care.

Throwing light on the difference, Dr Somshekhar, says, "Both palliative and hospice care provide comfort but palliative care begins at diagnosis and at the same time as the treatment.”

“When you say palliative care, many think it means the patient is dying. But palliative isn't only for people who are terminally ill, and it is not the same as hospice care.

“Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness," he says.

“Palliative care,’’ he informs, “focusses on the symptoms and stress of the disease and the treatment. It treats a wide range of issues that include pain, depression, anxiety, fatigue, shortness of breath, constipation, nausea, loss of appetite and difficulty sleeping."

“The goal is to improve the quality of life for both the patient and the family,” he adds.

Ask Rao how the government can step in to help create awareness and he says, “The government has slowly become aware and have accepted the importance of palliative care. In fact, government doctors from various districts have been sent to us for training.”

Today at 82, Rao is looking back in satisfaction.

“We are setting up a wing for education in palliative care wing in our new building,” he informs.

On for the road ahead, he says, “I’m training someone younger to take care of the day-to-day affairs so that the good work continues and more people can benefit from it.”

“I could do what I did it because my family was well-settled and I didn’t have to worry about them. I am thankful for what the society has given me. I want to pay it back.”

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