THIS ARTICLE WAS PUBLISHED IN INFOCHANGE INDIA
The pain of Roshanara
By Benita Sen
Cancer patient Roshanara’s morphine tablets keep her relatively pain-free. Morphine is part of palliative care, which allows terminally ill patients to live a life of dignity, free of pain. Why, then, is it so scarce in India?
All we have is an address from the hospital records. As we scour the bylanes of the approximate locality in Lucknow, that proves insufficient. Up and down the lanes we wind looking for the home of a fruit seller. And then, just when we are about to give up the search, one young man remembers a woman in pain. He leads us to the door of Roshanara.
The door opens. A woman sits up in bed. “Doctor saab! It’s you!” she exclaims, her pain almost forgotten for a moment. “I heard your voice outside and couldn’t believe it was you,” she says as Doctor Shakeel, in charge of the palliative care unit of the King George Medical University Hospital, checks the swelling on her foot.
The pain in the blue-green painted room is palpable. Not just the physical pain of Roshanara, but the pain of her two daughters who see her suffer and wait to give her the next dose of the white pill that will relieve some of the suffering.
Roshanara has spreading bilateral breast cancer. She was first diagnosed with cancer about 14 years ago and responded to treatment. But she had a relapse recently and this time, the pain has been so bad, it has kept her bedridden.
She doesn’t know what the white pills by her bedside are, but she does know that these tablets have brought her immense relief. “That’s morphine,” Dr Shakeel says. Roshanara takes one every 12 hours.
“Before they started me on these tablets, I would shriek in pain,” she recalls. “Her cries could be heard down the gully,” remembers her daughter.
Morphine use in India
Morphine looks innocuous. But the issues behind it are not. Roshanara does not understand the chemistry of morphine, an opiate analgesic extracted from dried poppy pods and stems, first isolated in Germany in 1804. Its extraction and purification was patented by Hungarian chemist Janos Kabay.
As a pain killer, morphine does not cause any alarming side effects nor is it addictive, a fact that many doctors do not know, say activists working in palliative care. “There is the fear of misuse and the morphine falling into wrong hands (read, the drug mafia) but for that, policing needs to be stringent,” points out one activist.
The World Heath Organisation Collaborating Center for Policy and Communications in Cancer Care notes that approximately one million people experience cancer pain in India, every year. ‘Unrelieved pain not only affects the patient, but also the family and the community,’ it says. It also accepts that ‘morphine is an essential drug for cancer pain management’, as a safe and effective treatment for severe pain. Ironically, the study notes that ‘India supplies much of the opium to make morphine for increasing use in the rest of the world, but it produces very little for domestic use due to lack of demand.’
Demand from the powers that be, perhaps, not the end-user writhing in pain. India gets barely six per cent of the world’s legal morphine. Palliative care is needed not just by cancer patients but by those with several other chronic illnesses including AIDS. Morphine is also given to patients recovering from heart surgery. That translates to over two million patients suffering avoidable pain when the answer can be the cheap, effective morphine. The United States’ 2007 International Narcotics Control Strategy believes 20-30 per cent of India’s opium crop is diverted to the grey market.
The Narcotic and Psychotropic Substances Act of 1985 raised the stringency bar. Anyone found misusing morphine could be put behind bars. Every Indian state has its own version of the Act. As a result, between 1985 and 1997, there was a 97 per cent fall in the use of morphine. From 573 kg, it plummeted to 18 kg.
“Two or three generations of doctors have not used morphine,” points out Poonam Bagai, a cancer survivor, founder of CanKids…Kids Can, and the vice chairman of Pallium India.
What of the side-effects?
In a presentation during a recent workshop on ‘Addressing pain and palliative care through improved cancer pain policy’, in Lucknow, Dr Sushma Bhatnagar of Dr B R Ambedkar Institute-Rotary Cancer Hospital (IRCH) Delhi, made the point that “allergy and intolerance are rare”. The landmark Boston Collaborative Drug Surveillance Project, 1980 (by J Porter and H Jick) found that of about 11,882 patients who received opiods, only four became addicted and ‘only one of these cases seemed significant’. The report notes: ‘A patient’s need for escalating dose of a narcotic, due to a cancer or other chronic illness, is most often due to progression of the disease rather than addiction. Patients with stable disease can be maintained on the same dose for extremely long periods of time.’
Why suffer needless pain?
At a very basic level, palliative care addresses any pain. “Not many doctors, nurses, paramedics and other professionals involved in health care understand that,” says cancer activist Samiran Das of the Saktipada Das Memorial Foundation who is trying to offer pain relief as part of palliative care at a clinic in the Sunderbans, West Bengal.
The availability of pain killers for a routine headache or a gripe in the stomach could be taken as the rock bottom of the palliative care ladder. This perspective also helps one empathise with the need for pain relief – as an important part of palliative care -- for people with serious, life-threatening diseases.
Although the first National Cancer Control Programme (NCCP) was initiated in 1975, it was only in 1984 that it recognised pain relief as a basic service. The modern medical concept of palliative care was introduced in India only in the mid-1980s. While the government has had a role to play, a good amount of the infrastructure and care that is in place is due to the efforts of individuals, NGOs and international players, including the World Health Organisation.
In the 1970s, the medical community had to think beyond aspirin. Patients in excruciating pain were given pure opium dissolved in tea. This was effective but impractical, since the opium had to be collected frequently from the authorities. Oral morphine entered the scene around 1986. The first pain clinics opened in the Regional Cancer Centre, Trivandrum, and at Kidwai Memorial Institute of Oncology, Bangalore, and they dispensed oral morphine free of charge for the first time. The first hospice, Shanti Avedna, started in Mumbai in 1986.
Today, morphine is available for pain relief, but the process is cumbersome and time consuming. Even a hospital running a palliative care centre needs to take licences from about five departments. As K M Mishra of the Cancer Aid Society found when he tried to get 300 tablets for Sanjay Gandhi PGI, this can mean that by the time the morphine arrives, the permit has expired. Dr L Jaichand Singh, a professor at Imphal’s Regional Institute of Medical Sciences (RIMS) faced something similar when he ordered 10,000 morphine tablets that should have helped cancer patients be free of pain for about six months. By the time the licences were through, the company ran out of stock.
For patients like Roshanara, too, the pills are not easily available and her husband has to go far to get her doses. Dr M R Rajagopal, the chairman of Pallium India and widely acknowledged as the father of palliative care in India, says that oral morphine reaches less than one per cent of the needy.
A drop in the ocean
Even today, 21 years after it was first introduced in the country, palliative care has barely pushed beyond the metros to some state capitals and larger cities. In 2005, the Department of Health and Family Welfare of the Government of India appointed a task force of 15 experts to assist and advise in the framing of the National Cancer Control Programme for the next five-year plan. Palliative care was one of the six features looked into.
Palliative care includes not just the patient but patient support and support of the family, for whom care-giving and watching a near one in unbearable pain is traumatic. It is about reversing crippling pain and giving the patient the opportunity to return even to a near-normal, self-reliant and economically viable life.
On April 28, 2007, the activist group Pallium India wrote to Health Minister Anbumani Ramadoss that although the budget for the National Cancer Control Programme was likely to be raised to Rs 2500 crore, the focus was on awareness and early detection. There was no separate allocation for palliative care although the Palliative Care Task Force had recommended a budget of Rs 50 crore to develop palliative facilities at various levels, besides training medical professionals.
Pallium India feared that not much attention and resources would be given to palliative care. They were taken aback to learn from the secretary of health that it was hoped that early detection would make palliative care redundant in 10 years. Scientifically, this is a wish that is yet to be proved true even in the most medically advanced nations. As Pallium India’s letter had pointed out, the world statistics for palliative care is one out of every two cancer patients.
Not allotting sufficient resources to palliative care, says Dr Rajagopal, means the medical establishment “will be free to continue expensive, high-tech treatment, even when futile, as most of them do now”.
In July 2007, the Supreme Court admitted a public interest litigation by the Indian Association of Palliative Care (IAPC) demanding “improved access to palliative care for those who need it in the country”, and arguing for the right to life and death with dignity.
IAPC requested the Supreme Court to direct both central and state governments to develop a palliative care policy.
Teaching palliative care
The only hope for patients like Roshanara is concerted effort at all levels. “It is easy to blame the red tape and the government, but the medical and nursing professions at large, have not accepted palliative care as an essential part of health care,” says Dr Rajagopal. Palliative care needs to be included in undergraduate medical and nursing curricula; it has been referred to as the forgotten chapter in medical education.
Young medics like Dr Shakeel, who was selected for the Lucknow Palliative Care Centre, need to be exposed to palliative care. When he was asked to go to Kochi to train, he wondered what he’d learn in six weeks that he didn’t know from medical school. He came back transformed.
“I learnt to communicate with patients, to break the news of the diagnosis, to prescribe analgesics and morphine and adjuvants.” The stress, he believes, is still on curative rather than palliative, but few realise that the two can go hand in hand.
The concept of palliative care is going from the metros to smaller cities and villages, but will the morphine get there?
(Benita Sen is a journalist and author)
InfoChange News & Features, April 2008