Over the past couple of decades, Kerala has built a robust reputation as one of the best places for palliative care globally.

The contrast in the state of affairs for terminally ill patients now as opposed to thirty years ago could be seen in an experience related by Dr MR Rajagopal- an anasethetist based in Trivandrum. Thirty years ago, he was newly appointed as head of department at the Calicut Medical College Hospital. An oncologist referred a 42 year old college professor to him. The professor suffered from cancer of the tongue.

The doctor performed a nerve block and asked the patient to come back in 24 hours. The pain has nearly disappeared the next day.

“He asked me when he should come back. I told him there was no need to come back, unless the pain returned. I thought he would be happy I had cured the pain. Instead, he went home and killed himself that night,” says Dr. Rajagopal.

The problem was that the oncologist hadn’t told the professor that his cancer was terminal.

“It was only when I told him there was no need to come back that he realised his cancer was incurable. He went home and told his family it was all over,” said Dr. Rajagopal.

The experience made the doctor to reassess his practice. One of the tasks of an anaesthetist’s job is to tackle pain.

“In those days pain was all over the hospital. It was everywhere. We pretended not to see it, but it was there. Injections of morphine were used sparingly, after surgery and for patients injured in accidents. It was never used in cancer pain,”he said.

Medical care givers managed the suffering of the terminally ill the same way they did everywhere. “No one teaches you, but you learn to see only the disease, not the human being who has it. Maybe if there is nothing you can do it is easier to turn your back,” said the doctor.

Not the first traumatic experience

His experience with the professor wasn’t the first traumatic experience the doctor had with the dying. When he was in the first year in medical school he lived very close to where a man with terminal cancer of the sweat glands lived. “I would hear him screaming in the night. He had nodules all over his scalp. The family knew I was a medical student and asked if I could do anything. I didn’t know how – I was helpless. I am ashamed that I never visited him after that. I did not want to go there and feel helpless again.”

Then, there was also once a patient with a gangrenous toe who suffered severe pain. “I asked my head of department if I could try a nerve block. He refused – it was not part of routine care and there was a shortage of anaesthetists. I had to tell the man there was nothing I could do. I still remember the look of hopelessness on his face.”

When the doctor found himself to be an HoD at Calicut, no one was around to tell him what he could do or not. That’s how the college professor was referred to him. But the patient’s suicide opened his eyes to the fact that treating the pain wasn’t enough.

“I realised that thinking about nerve blocks was too narrow. Pain is just the visible part of the iceberg of suffering. What is ignored is the part below the surface – feelings of hopelessness and despair, worries about money, about children. That is what palliative care is about. That man gave up his life to help me understand it.”

Built by medical professionals and volunteers

Regarding end-of-life care, India is near the bottom in world ranking- coming 67 among 80 nations in 2015. However, Kerala is an exception even within the country. Though the state itself has just 3 percent of India’s population, it provides two-thirds of the nation’s palliative care services.

There’s a strong community involvement- a league of volunteers- who make this possible. Even though it’s said that Kerala’s strong sense of community is the reason for the success of the service, making it hard to replicate elsewhere, Dr. Rajkuma disagrees.

“Yes, of course the strength of the community is important. But is Kerala the only part of the world where there are compassionate people? Is Kerala the only place where people who may have gained material success then want to do something meaningful with their lives?,” he says.

The doctor, now 69 year old, became aware early on that tackling pain and assisting the dying both couldn’t be achieved with the help of medical staff alone. There was just too big a need. Volunteers were necessary.

After attending a course run by Gilly Burn, an English nurse, he started the Pain and Palliative Care Society in Calicut. The year was 1993 and two men who partnered with him in the venture were his colleague Suresh Kumar and an activist friend, Ashok Kumar.

“Six of us put in 250 rupees each, worth about £10 then,” says Dr Rajkumar. “We found two volunteers, young women with children at school, to register patients and sit and talk to them. Then I would come after work to see them.”

The project zoomed ahead once Burn donated Rs.1,000,00. The donation helped them appoint their very first doctor while the Calicut hospital provided them with two nurses.

“It very quickly got attention. In the hospital, we were working in a sea of suffering. But in the clinic, you could see people smiling, talking, finding comfort.”

Getting copied

Within just an year, the model got copied- by a medical professional whom Dr Rajkumar met during a train ride, also by an ex-student who wished to open a clinic in his town.

One limitation was accessing patients who were in remote regions. A problem that became glaringly obvious when a young man once came to them, asking for help for his mother who was under excruciating pain. The woman lived in a remote spot without roads and from where she couldn’t be moved. Kumar informed the man that the doctors couldn’t prescribe without seeing the patient. The man’s eyes filled with tears. Kumar acceded that someone would come to check on the patient. This turned out to be their first home visit.

The demand for home visits gradually increased and someone even donated them a vehicle for the purpose.

The doctors who worked in their spare time couldn’t meet the high demand on their own. Volunteers played a key role in this.

By the year 2000, there were 30 palliative care groups in northern Kerala alone. Official data is not available but Dr Rajkumar estimates that today, about 300 groups exist in the state, giving care to patients in their homes.

The state has become a WHO demonstration site for palliative care. Visits from international groups to study the model is only common.

With inputs from scroll.in

Image credits: herzogherald.com

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