In India, a Quest to Ease the Pain of the Dying
Tuesday, September 11, 2007
It was a neighbor screaming in pain 35 years ago that set Dr. M. R. Rajagopal on the path to his nickname: India?s “father of palliative care.”
“He was dying of cancer, with lots of tumors on his face and scalp,” Dr. Rajagopal recalled. “His family asked if I could help, and I couldn?t ? I was just a medical student.” TRIVANDRUM, India ? It was a neighbor screaming in pain 35 years ago that set Dr. M. R. Rajagopal on the path to his nickname: India?s “father of palliative care.”
“He was dying of cancer, with lots of tumors on his face and scalp,” Dr. Rajagopal recalled. “His family asked if I could help, and I couldn?t ? I was just a medical student.”
Today, the same neighbor with the same cancer would almost certainly die the same way ? unless he lived in tiny Kerala State, where Dr. Rajagopal runs his Pallium India clinic here in the capital. Although opium was one of the chief exports of British India and the country still produces more for the legal morphine industry than any other country, few Indians benefit. They end up like millions of the world?s poor ? spending their last days writhing in agony, wishing death would hurry.
About 1.6 million Indians endure cancer pain each year. Because of tobacco and betel nut chewing, India leads the world in mouth and head tumors, and has high rates of lung, breast and cervical cancer. Tens of thousands also die in pain from AIDS, burns or accidents.
But only a tiny fraction ? Dr. Rajagopal estimates 0.4 percent ? get relief.
Clinics dispensing morphine are so scarce that some patients live 500 miles from the nearest. Calcutta, a city of 14 million, has only one.
“For a poor person here, that means just forget it,” said Dr. Mhoira Leng, a palliative care expert from Scotland. “It goes from dire to dreadful.”
The exception is Kerala, where Dr. Rajagopal practices and about 80 percent of India?s palliative care is delivered. A small slice of the southwest coast, it is sort of India?s Massachusetts: it has a mere 3 percent of the population, but high literacy rates, responsive local leadership and a bent for bucking central government.
The state government allows any doctor with six weeks of training ? which Dr. Rajagopal provides ? to prescribe morphine.
Elsewhere, the state laws enforcing the Narcotic Drugs and Psychotropic Substances Act, passed in 1985 to curb drug trafficking, are complex and harsh. The book outlining them is 1,642 pages, and even minor infractions can mean 10-year sentences. Legal morphine use in India plummeted 97 percent after 1985, reaching a low of 40 pounds in 1997. It has since crept up.
“India is a regulatory morass,” said David E. Joranson, director of the Pain & Policy Studies Group at the University of Wisconsin medical school. “It is controlled by the Ministry of Finance, and the rules are based on excise regulations that go back to the British Raj.”
Each shipment requires five licenses. Pills must be locked in two-key cabinets. When patients die, families must return unused pills ? sometimes a struggle in a country where the dead may be cremated with their medicines.
Many pharmacists just cannot be bothered.
“It?s a vicious circle,” Dr. Rajagopal said. “If a doctor does get interested, he runs into all these objections. And he eventually loses interest.”
And raising that interest is a struggle, because most were taught notions long faded in the West ? that morphine inevitably addicts and kills.
Dr. Rajagopal lectures constantly at small hospitals. Morphine can be tapered off, he teaches. And with pills, rather than injections, accidental overdoses are almost impossible.
Dr. Rajagopal?s manner is soothing ? he sits on beds, holds hands and even strokes patients as he questions them. “For a senior doctor in India, that?s just unheard of,” Dr. Leng said. “They usually keep a formal distance.”
Talking unravels fears. Chandraprabha, 40, who like many people here uses only one name, avoided her hourly pills because she could not bear to look at a clock ? it reminded her she was dying and her children would go to a stepmother she detested.
Abdulaziz, 62, said that what upset him more than death was that he felt too unclean to pray.
“My body is not pure,” Abdulaziz mourned. “Also, because of the bandage, it?s difficult to bathe.”
He had sung the call to prayer at his mosque for 20 years, but had to stop in January when mouth cancer left him able only to mutter. Then the aggressive tumor ate through his face, making a beefy crater as if a firecracker tucked in his cheek had gone off. Then, worse: a fly got under his bandage, and maggots began emerging, leading his imam to “excuse” him from attendance.
That was something Dr. Rajagopal?s team could help with ? cleaning out the ghastly invaders. And the six morphine pills Abdulaziz takes daily have taken away what he called “a catching pain, like a fishhook in my face.”
As the cancer advances, Abdulaziz will presumably need more ? some patients take 15 times his dose without even getting drowsy.
As the cancer crushes his trachea and esophagus, the palliative care team will give him, unless he refuses, a nasal tube to his stomach for a rice and pill slurry. Then, if he wishes, a tracheotomy tube. As his lymph glands swell, cutting off arteries to his brain, the team may offer steroids. And finally, as he slips away, more morphine to fight the panic of breathlessness.
Treating pain alone is not enough, Dr. Rajagopal explains.
As a young anesthesiologist, he helped a professor with a cheek tumor by injecting alcohol to kill the nerve. It worked ? but the professor hanged himself two nights later.
“I learned from his cousin that the fact that I had treated him for his pain alone was what told him his condition was incurable,” Dr. Rajagopal said, still feeling guilty about it. “None of us had ever asked him what he knew about his disease, or how he felt. If only we had, maybe his children could have had their father for a couple of years more.”
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