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Painful facts

By Benita Sen

Over 7 million people in India suffer avoidable pain simply because they have no access to morphine, says a Human Rights Watch report on India’s obligation to ensure palliative care

Human Rights Watch, Unbearable Pain: India’s Obligation to Ensure Palliative CareOn October 29, 2009, Diederik Lohman of Human Rights Watch, an independent organisation going back 30 years, released his findings in Unbearable Pain: India’s Obligation to Ensure Palliative Care. For those following the state of palliative care in the country, the report contains few surprises and reinforces what has long been argued: that India has a lot to do to fulfil its obligation to people experiencing excruciating pain.

Over 7 million people in India (Human Rights Watch) suffer avoidable pain simply because they have no access to morphine. The pain can be so crippling that many patients say they’d prefer to die. Indeed, some of them have taken their own lives, says Dr M R Rajagopal, chairman of Pallium India Trust (Tel: 0471-3257400), considered one of the pioneers of the palliative care movement in India.

People in agony are often unseen and unheard because they drop off the social radar, unless they happen to be family or close friends. They are people battling life-threatening conditions including cancer, HIV/AIDS, tuberculosis and renal disease. Many paraplegics too suffer extreme pain.

The Human Rights Watch study was conducted over one year in various parts of India including Kerala, Rajasthan, Andhra Pradesh, West Bengal, Delhi and Uttar Pradesh. The report highlights that besides Kerala (India’s palliative care capital, where most of the credit goes to individuals and private organisations more than government organisations), most of India, from state governments to the medical fraternity, has failed to recognise the need for palliative care, let alone act on it.

Palliative care is an intrinsic part of modern medicine. But in India, it is not part of the medical school curriculum beyond the occasional mention. Unlike curative medicine, the aim of palliative care is to enhance the quality of life of anyone in pain. As Harmala Gupta, cancer survivor and founder of CanSupport (helpline number: 011-26711212), the first free palliative care home support service in north India, points out, palliative care can be hospital-oriented or home-based. “Pain is total, it is physical; it is the pain of fearing separation from your family; the pain of unrealised dreams.”

Palliative care begins with physical pain relief and goes into the psychological, social and spiritual spheres. It can be limited to the patient or extended to the family, caregivers and even palliative care volunteers shaken by the pain and suffering they see during the  course of a working day. 

Harmala, who suffered intense pain whilst battling cancer, is convinced that palliative care and pain management are “not for the end of life but necessary from the word go. Most doctors are too busy trying to cure the patient. The pain does not seem important in the context of fighting the disease. But for the sufferer, the pain is a palpable reality. It is scary”. Most of this pain is too intense to be treated by analgesics and OTC painkillers.

Many of us are made to believe that pain is a natural part of disease. Perhaps that’s why there are so few pain clinics in India. A pain scale measures the fifth vital sign of the patient’s physiological condition, after temperature, pulse rate, blood pressure, and breathing rate. But how many doctors use this established method to measure the level and extent of a patient’s pain?

Constant and intense pain -- needless pain, as any palliative care expert would tell you -- affects the patient, the caregiver, the family, even the neighbourhood. As breast cancer patient Roshanara once explained to me, before she was put on morphine the pain was so excruciating that her screams could be heard down the lane. The pain of one sufferer can affect several people.

Unbearable Pain: India’s Obligation to Ensure Palliative Care explains: “Persistent pain has a series of physical, psychological and social consequences. It can lead to reduced mobility and consequent loss of strength; compromise the immune system; and interfere with a person’s ability to eat, concentrate, sleep, or interact with others. A WHO study found that people who live with chronic pain are four times more likely to suffer from depression or anxiety.”

The uses of morphine

Morphine is an opioid derived from poppies. India is one of the largest legal producers of opium. It is also one of the largest exporters of the opiate. Morphine needs to be controlled globally to avoid its misuse as a narcotic. Today, the reality in India is: if the farmer growing poppy is stricken with unbearable pain, he may not get morphine to assuage it! Or, he may have to buy it off the black market.

Morphine is also shrouded in misconceptions such as ‘morphine is addictive’. “It is certainly not,” clarifies Dr Nagesh Simha, president-elect of the Indian Association of Palliative Care. Research has proved that once the pain is no longer there, almost all patients do without it. Medically, morphine is administered in tablet form, where addiction rates are low. Dr Rajagopal says: “In Kerala, we monitored 1,723 patients who had been administered morphine at home. There was no addiction, misuse or diversion to illicit channels.”

Although the distribution of morphine must be strictly monitored, as the 1998 department of revenue report recommends, states need to find a solution so that they don’t deprive those who truly need it. In 2008, only around 40,000 of the million-odd cancer patients were administered morphine.

The solution is “in plain sight: the government must integrate palliative care into hospitals”. Let’s hope this report drives the point further home.

Dr Rajagopal is convinced that a society’s humaneness should be measured by the extent of palliative care in that society. Diederik Lohman says that in countries like the Netherlands and USA, morphine and other pain control medicines are readily available. It is “inconceivable that cancer care hospitals should have no morphine”.

Sharing her experiences, Dr Gayatri Palat of MNJ Institute of Oncology, Hyderabad, calls palliative care is “the missing link in the development of medicine”. The general consensus among health workers is that our government, like those of most other advanced countries, must come out with a palliative care policy and integrate it with routine treatment. After all, this “horrific” pain, described by one patient as “a thousand times worse than a normal headache”, is completely unnecessary.

Subair’s story 

Palliative care is not just for those whose condition is beyond medical intervention. It can help thousands of people lead a meaningful, productive life even as they are being treated.

When Subair was 21 he was diagnosed with a tumour that forced him to undergo an amputation of his foot in 1979. In 1985, when the cancer spread, he underwent a second amputation, this time above the knee. In 1992, the cancer recurred, this time with a terrible pain that kept him away from work. He stopped earning and had to send three of his four children away to an orphanage.

Two years later, when the Pain and Palliative Care Clinic in Calicut Medical College opened, Subair was put on oral morphine. Since then, he has been running a coffee-vending machine in the hospital, provided by the palliative care unit as part of his rehabilitation. Pain-free and economically independent, he was able to take his children out of the orphanage and ensure that they got an education.

As Subair’s disease continues to progress, his morphine requirement has risen to 600 mg a day. “The eldest son is now working and a daughter has married,” says Dr Rajagopal. Subair’s case is so convincing he was recently asked to address a group of medical students. The session went on for 90 minutes.

 

Vital statistics about palliative care

  • Kerala is India’s premier state in palliative care. It has around 140 palliative care centres.
  • 18 of the 29 government-run regional cancer centres in other parts of the country do not have medical personnel trained in palliative care and counselling; nor do they administer morphine.
  • Training is important as there are different kinds of pain, some of which may worsen with morphine and require other forms of treatment.
  • In India, about 70-80% of cancer patients are beyond treatment and need palliative care. The cancer budget, on the other hand, is hugely tilted towards treatment and has no separate allocation for palliative care.
  • Palliative care and pain management rely much less on technology than the treatment of diseases that are accompanied by unbearable pain.
  • Palliative care is low-budget compared to other cancer medication. The cheapest morphine tablets cost less than Re 1 per 10 mg but can go up to almost five times as much, depending on the manufacturer. “An average patient needs about 70-100 mg a day,” says Dr Rajagopal. That’s about Rs 200 every month. Since morphine is almost always taken with other palliative care medicines, the daily medicine expense could be Rs 25-40. Dr Ambika Rajvanshi of CanSupport estimates their patients need morphine worth between Rs 2,000 and Rs 8,000 a month.
  • Andhra Pradesh, that has the highest number of people with HIV/AIDS, has one palliative care centre.

(Benita Sen is a journalist and author) 

Infochange News & Features, December 2009