Dr Jagadeswar Reddy injects 50mg of Tranexamic acid into the intravenous canula of an eight-month-old boy. He is suffering from epithelioid sarcoma. On the left side of his neck, a big ball-size tumor oozes blood.

Thrice a day at the MNJ Institute of Oncology’s pediatric ward in Hyderabad they inject Tranexamic acid to stem the bleeding. His eyes beat like butterfly wings. He is on 1.5 mg morphine every six hours, to reduce the pain. The bleeding is unstoppable.

Next to the boy lies Sr Lakshmi, an achingly beautiful girl of 11, studying in class 6. Blood cancer. Her father is dead and her mother a daily labourer from Krishna district in Andhra Pradesh. She feels terrible chest pains and her cough rattles the bones in her jaw. She feels as if they’re broken inside.

After two weeks, to be over soon, doctors will give a prognosis. Her younger sister is at home. “After taking the tablet, the pain is more bearable,” Lakshmi says.

“I shudder to think of children and adults writhing in pain without access to palliative care,” says Dr Gayatri Palat. She is the Program Director, Palliative Care Access Program (PAX) India, International Network for Cancer Treatment and Research (www.inctr.org), Consultant, Pain and Palliative Medicine, MNJ Institute of Oncology and Regional Cancer Centre, Hyderabad, Member, Board of Directors, International Association of Hospice and Palliative Care.

MNJ is the regional cancer centre in Andhra Pradesh where palliative care is available. In the hospital’s pediatric oncology and adult wards, palliative care teams rally to bring the pain under control.

Dr M R Rajagopal, chairman, PalliumIndia, one of the pioneers of palliative care in India, says palliative medicine involves “identifying various dimensions of suffering—physical, psychological, emotional and social and spiritual—and manage them whether cure is possible or not.”

Across India, Dr Rajagopal says, there are some 24 lakh cancer patients, with 1 lakh new cases every year. Roughly two-thirds will have moderate to severe pain for some period. Just 1 to 4 per cent get some relief, the remainder die in pain.

It encompasses, Dr Gayatri says, “a big spectrum: supportive care during treatment, terminal, end-of-life care, and bereavement care.”

Statistics show how desperately necessary such care is. At any time, there are at least 100 children in the centre. In Andhra Pradesh, at least two lakh cancer patients suffer the agonies that accompany the disease, with 10,000-12,000 new cases every year, of which 1,000 are children.

Across India, Dr Rajagopal says, there are some 24 lakh cancer patients, with 1 lakh new cases every year. Roughly two-thirds will have moderate to severe pain for some period. Just 1 to 4 per cent get some relief, the remainder die in pain.

According to Dr Suresh Kumar, 9.8 crore people die in India every year, and six crore need palliative care to ease pain and suffering. There are fewer than 1,000 palliative care centres in India, and less than 2 per cent of patients have access to it. Kerala, with 3 per cent of the population, has more than 90 per cent of the palliative care services in the country. Dr Suresh Kumar is director of the Institute of Palliative medicine, Medical College, Calicut, and also the director of the WHO Collaborating Center for Community Participation in Palliative Care and Long Term Care.

India is in an epidemiological transition, says Dr Gayatri, with non-communicable and chronic illnesses (cardiovascular diseases, cancer, respiratory diseases) the leading causes of death. The illnesses, especially cancer, are extremely painful. Awareness is low among public and doctors. They don’t know there are effective medications for pain, and that pain can be relieved.

“This pain is avoidable,” Dr Gayatri says. “For any disease, pain is the most common thing. We treat pain and increase the quality of life.”

Sheer determination on the part of specialists, nurses and the larger community has made palliative care a part of regular healthcare in Kerala. “Some panchayats stock morphine, and the community takes care of the dying and patients in extreme pain,” says Dr Gayatri. 

Speaking of insights gained from two decades of palliative care, Dr Suresh Kumar says, “It taught me about the role of the common man in reducing suffering and pain in his own community, in his own neighborhood. Human beings are complex, diseases affect them in complex ways, so intervention must also at different levels, social, psychological, emotional and even spiritual.” 

“This can be done, he says, “this is being done in Kerala, this can be done across the country. I learnt that palliative care is possible in our communities. We can intervene and reduce the pain and suffering.” 

“Palliative medicine is a low investment specialty,” says Dr Gayatri. “All it
requires is good attitude. Empathy for people who are in pain.” She talks about levels of care that made Kerala a successful example: in remote areas, villagers, and nurses can be trained in basic pain management and relief, providing relief for bed-ridden patients whose bed sores and bowels give them horrific trouble; local panchayats can store basic medicines for this. 

At the secondary, mandal or district level, a trained palliative care specialist should take care of terminally ill patients and referred cases from villages, and at the third level, there is specialised care. “Ideally, it should be a part of internal medicine and general practice. Most importantly, it should be part of pediatrics.” Notable among others are Delhi-based CanSupport (for palliative care) and CanKids (for curative treatment and palliative).

A lot of misconceptions surround palliative care: that it is end-of-life care; that it only comes in when doctors give up on patients; that it is only for the pain and dying; that it’s just hand-holding; that its science is not rigorous. More sinister, it is the same as euthanasia.

A recent TV debate on a news channel conflated palliative care with euthanasia, where everyone talked their heads off in high-pitched ignorance, with the anchor opining and goading them on. The talking heads flailed in the swamp of their own bile. It was quite a congregation of ghosts on TV, and quite a prime time thing for India.

“Nobody who talked knew the meaning withdrawal of life support, no knowledge, no nothing, not even basic understanding,” one palliative care specialist fumed.

Palliative care specialists bristle at the misconceptions and canards. They cannot stand the sort of advice given by doctors and relatives: “You have cancer and you will have pain, and you have to bear it”. This is the kind of thing you say when you’re not going through it.

What do you do when every breath feels like lifting a ton of concrete, with a malignant tumor in the lungs? Imagine the body smeared with chilly powder and placed on a fire. Imagine high voltage current passing through, pain of the kind when fingernails are being pulled out. Or jabbing a knife in and twisting it. Some people may be unable to articulate, and die a most painful death.

“We should shout from the rooftops,” says Dr Rajagopal, “that palliative care is for the living, not for the dying.” It’s just not pain relief. “Palliative care takes a person as a whole and intervenes in reducing suffering in all its aspects and improving the quality of life.”

One morphine tablet costs 90 paise, cheaper than paracetamol, acts on pain most cancer patients suffer but the law ensures that avoidable pain cannot be avoided. It’s an irony—India is one of the largest producers and exporters of poppy. Government factories in Ghazipur and Neemuch manufacture morphine for domestic consumption. But the government thinks it will be misused or people will get addicted.

“We affirm life,” says Dr Gayatri. “People suffer during curative treatment. A person undergoing chemo will have multiple mouth ulcers. They’re really painful. ART therapy for HIV patients takes care of the disease, but what about other co-infections and pain?”

People want to end their pain, not die. “We see many instances of people suffering from chronic disease and cancer. They come and tell us to give medicine so that they can die. You give them pain medication, including opioids, they feel better the next day, and start hoping, ‘Will I get well soon’?”

Sometimes curative treatment itself is a source of immense pain. Drawing upon his experience with the NHS in UK, Dr Subrahmanyam, president of Sparsh Hospice and anesthesiologist, says, “The state of palliative care in India is pathetic. Most of the time we don’t do what is in the best interests of the patient. In England a team of radiation, medical, surgical oncologists sit together and assess the case, and then launch treatment. When all else fails, we have to stop fighting life at some point and give the patient the best quality of life for the remaining period.”

Children in the oncology ward, says pediatrist Jagadeswar Reddy, suffer due to procedures. “Lots of blood samples for tests. If there is a bone marrow test, that can be really painful.” In all these cases, palliative intervention reduces the suffering.

Even doctors look down upon the discipline. Trained as surgeons and physicians, their language resembles that of war, the body a battleground—cutting up and sewing, pumping in aggressive chemicals or fixing a lung. All these procedures entail severe pain—for them palliative medicine and care may feel like mushy stuff. So they deride it. Their thinking is that even nurses can do that—administer morphine.

“No,” Dr Gayatri says, “that’s not how it is. Delivering care is an art. Death is a natural part of life. Why should people suffer unnecessary, avoidable pain? It’s hard-core science, backed up by research. Studies have shown that palliative care can even make the patient live longer. A continuous stream of research appears in journals.”
“The real problem is,” says Dr Rajagopal, “most doctors don’t have fundamental understanding of pain, not to speak of all its dimensions, and don’t know how to reduce and manage it.”

Pain is a wicked brew of affects. Palliative medicine takes care of a range of complications and offers cures for: intractable diarrhea, vomiting and nausea, especially after chemotherapy, constipation, ulcers, breathlessness, which regular medicine cannot provide. Palliative teams from MNJ dress foul-smelling wounds, wash wounds with turpentine oil to ferret out maggots, go to homes to care for the sick who cannot come to hospital (it has home-based service and outreach programmes from Monday to Friday), provide rehabilitation for the children of a dying mother, and distribute groceries for poor patients.

Inspired by Dr Rajagopal, Dr Gautam Majumdar, head & medical superintendent of the Regional Cancer Centre, Agartala, Tripura, started a palliative care project on November, 7, 2011 with trained health personnel. This is the only example of success in the North East. “We have two teams comprising one doctor and two nurses (one male, one female),” he says. There are eight social workers under the registry programme throughout the state who take active part in home-based care of cancer patients. 

The team visits seven or eight patients a day. “We cover the extreme distance from Agartala to Dharmanagar and Sabroomare, 198 km and 136 km in the north and south of the state. 

In home-based care, teams take shelter in Dak bungalows. Transport costs are borne by Pallium India to the extent of ₹30,000 per month. Medicine is partially paid for by Pallium India and by the state government.”

The teams go with medicines for 11 diseases. “We take care of people with severe arthritis, paraplegia, cerebral palsy and Down’s Syndrome, among others.” 

“At the Regional Cancer Centre one OPD is devoted to cases where active treatment is not possible.” He purchases morphine from Lisie hospital in Kochi, Kerala. Speaking of his experience, over the phone, he says, “After our teams started visiting really sick and dying patients, entire families and neighbourhoods got galvanised. Previously, patients lived in
hopelessness and isolation. Now, extended families talk to us and they want to do something for their own suffering relatives and friends. Some have pitched in to help poor families.”

He is happy that patients have no pain. He says there is not even one radiation oncologist in Sikkim, Arunachal Pradesh and Meghalaya. In Nagaland, there maybe one, but not in government sector, and is far off.

He feels cancer rates in the North East are similar to that of the rest of India. About 50-60 per cent of cancers in NE are tobacco-related. It is also home to some peculiar cancers. “In Mizoram, Aisoledt district shows greater incidence of stomach cancer. The reason is that they consume liquid tobacco.”

“We don’t treat the disease, but we manage symptoms. We counsel them for fear, anxiety and depression, and anxiety aggravates pain,” says Dr Vidya, excusing herself to guide the home-care service team who are with a dying patient in a filthy part of Hyderabad. “During curative treatment, palliative treatment is less, towards the end of life palliative care takes over more and more.”

Moreover, more than 80 per cent of patients are impoverished, and die in isolation. “Many die in emotional and social isolation. HIV and cancer are still stigmatised, monumentally more so in the former case,” says Dr Gayatri. “Families isolate them. They don’t allow children to play with them; in some instances, they want to get rid of them.”

“So we step in,” says Vineela, an articulate program coordinator, whose enthusiasm is infectious.

Palliative care and medicine has not taken off even after more than two decades as it should have in India. The first palliative service was Shanti Avedna Sadan, started by Dr Luceto D’Souza, in 1986 in Bombay.

The major issues in palliative care are: Policy, education and training and drug availability. There is no overarching policy at the central level. Except in Kerala, no state has given official backing to it. Mostly, it’s relegated to charity. After Neighborhood Network in Palliative Care (NNPC) spearheaded the campaign in Kerala since 1999, the Kerala government made palliative care a part of primary healthcare in 2008. In 1994, an umbrella organisation, Association of Palliative Care, was formed in collaboration with WHO and government of India.

Education and training is nowhere near the levels required. After much campaigning, the Medical Council of India recognised it as a speciality only in 2010, and a course started in 2012. Now, two students are enrolled at the Tata Memorial Hospital, Mumbai, for post-graduation in palliative medicine.

Dr Suresh Kumar has a list of some other centres: One-year residential fellowship programme, Christian Medical College, Vellore (Tamil Nadu), Kidwai Memorial Institute of Oncology, Bangalore (Karnataka), and one-year distance education fellowship, Institute of Palliative Medicine, Calicut (Kerala). There is an eight-week certificate course in essentials of palliative care by the Indian Association of Palliative Care with an optional clinical placement component happening simultaneously at 30 centres across India. In addition, there are six-week and four-week residential programmes for doctors and nurses at the WHO collaborating centres, Calicut and Thiruvananthapuram, Institute of Palliative Care, Trissur, Kerala, District Hospital, Ernakulam (Kerala) and MNJ Institute of Oncology, Hyderabad. (Dr. Jagadeswar Reddy at MNJ is the first-of-his-kind in pediatric palliative care.)

“Basic modules of pain assessment and management should be taught in medical schools. Most importantly, how to communicate with patients and give them comfort,” says Dr Gayatri.

Unlike the West, where undergraduate and post graduate students get basic palliative care training, in India no such thing exists.

“Students in our medical schools follow the standard text book of Harrison’s,” she says. The first five chapters are devoted to palliative care. Students skip them. We skipped them. It’s because the content doesn’t appear in the exams.”

The mindset of doctors plays a role: trained to attack disease, doctors feel a sense of defeat when the disease is winning. Fresh out of medical school, they feel that, and in due course, many of them turn indifferent. The second, palliative care specialists say, is that they think they have nothing more to learn.

All palliative care specialists worry about drug availability, especially morphine. “Cruel paradox,” says Dr Rajagopal.

The Narcotic Drugs and Psychotropic Substances Act (NDPS), passed in 1985, is a classic case of throwing out the baby with the bath water. Its provisions are intended to curb drug trafficking and diversion. It has rigorous punishment for anyone who diverts the stuff. Pharmacists, who have no control over its diversion, refuse to store it. And pain rolls in waves across the length and breadth of the country.

It’s an irony—India is one of the largest producers and exporters of poppy. Government factories in Ghazipur and Neemuch manufacture morphine for domestic consumption. But the government thinks it will be misused or people will get addicted.

“Since the 1950s, we did not have beneficial use of morphine, not even oral morphine,” says Dr Rajagopal. “Only recently oral morphine has been added in essential drugs list but many hospitals don’t stock it.”

One morphine tablet costs 90 paise, cheaper than paracetamol, acts on pain most cancer patients suffer but the law ensures that avoidable pain cannot be avoided.

The Act allows to states to make rules. “This has caused enormous confusion.” In 1998, states were asked to amend the act—some did and some didn’t. Yet another impediment is multiple licences required to stock morphine.

Dr Rajagopal expects some amendments to the NDPS Act during this session of Parliament. In 2008, Indian Association of Palliative care filed a PIL in SC, which came up for final hearing in 2012, and government started acting on it. After two decades of frustration, he says, there are hopeful signs in 2013.

“We expect there will be a single authority for licensing and monitoring of opioids,” he says.

Secondly, palliative specialists drew up an implementation framework and strategy document for India. WHO India is conducting an operational analysis of it. “This year, the palliative care plan will roll out across India.”
Back at the MNJ, a woman of 43 comes into palliative care room 34. She is from Medak district in AP. On her left is a wound, a bloody cauliflower with a hole in it, the result of carcinoma of the buccal mucosa.

Radiation is over for her. A Ryles tube is inserted in the nose. The nurses have cleaned the wound and applied metrogyl powder to arrest the foul smell. They give her sodium bicarbonate solution to wash the mouth every two hours. The palliative team, after assessing her pain score and prior use of narcotic drugs for pain relief, starts off with 50 mg Tremedol. After two or three days, the team is going to ratchet up the pain medication according to the WHO pain ladder. The morphine dose shouldn’t make the patient drowsy, that is the yardstick. Just another case at the MNJ but for the patient it is the difference between agony and relief.

Revised WHO guidelines state that for any life-threatening illness, palliative care may have to start from diagnosis, continue through treatment and illness. Access to pain medication is a basic human right in the West, but not in India.

The report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, says: “In India, more than half the regional cancer centres do not have morphine or doctors trained in using it. This is despite the fact that 70 per cent or more of patients have advanced cancer and are likely to require pain treatment.”
A statement jointly issued by the Special Rapporteur on the right to health and the Special Rapporteur on torture says: “The failure to ensure access to controlled medicines for the relief of pain and suffering threatens fundamental rights to health and to protection against cruel, inhuman and degrading treatment. Governments must guarantee essential medicines–which include, among others, opioid analgesics–as part of the minimum core obligations under the right to health, and take measures to protect people under their jurisdiction from inhuman and degrading treatment.”