Where there is pain, no head can be held high. We used to witness this every day as our teams travelled from door-to-door and from patient-to-patient bringing succour and relief to those facing the challenge of an advancing cancer. It was always about pain! Here was some one crouched in a corner on the floor, there was some one else banging his head against the wall, and yet another being held down by distraught relatives as he thrashed about like a fish on a hook. Small wonder then that as they went about their tasks, our teams began to suffer burnout born out of a sense of helplessness in the face of such great suffering. All of this changed after we got our licence for oral morphine and could now assure our patients that their physical pain would no longer hold them captive.
Outdated regulations
Sadly, there are millions in India today who are not as lucky. They have been denied freedom from pain because of outdated and onerous regulations which were brought in by the British and continue to this day in spite of advances in medicine. This is the state of affairs that shames all of us who work in the field of palliative care in this country. We, too, cannot hold our heads up high anywhere.
A few months ago we were so hopeful that this would finally change. The Revenue Ministry, under an enlightened leadership, amended the Narcotic Drugs and Psychotropic Substances (NDPS) Bill so that access to oral morphine for pain control would no longer be the prerogative of a lucky few. But I am afraid that our hopes were belied when the amended Bill in its latest version was not passed in the last session of Parliament as all activity in that once hallowed place ground to a halt. It has left us wondering whether the Bill will be tabled and passed in the coming session or not so that India can finally join the comity of civilized nations and can show through its actions that it cares for the well-being of its citizens.
The journey to bring pain relief to those suffering from life limiting and debilitating conditions has been a global one. Though it required committed advocacy, nowhere has it received more resistance due to misinformation and convoluted licensing procedures than in India.
‘Total pain’
It began in the 1950s, in the United Kingdom, when a British nurse, Dame Cicely Mary Saunders noticed the inadequacy of the alcohol-laced pain concoctions that were being handed out to her dying patients (of which the “Brompton cocktail” was the most famous). She also remarked on their relative neglect by the hospital staff. She was later to coin the term “total pain” to describe the physical, social, psychological and spiritual suffering of these patients and followed it up by creating a special space for them (a “hospice”) in North London.
For the first time now, patients received the compassionate care they deserved along with effective, symptomatic relief based on the latest scientific and clinical research. The introduction of tablets of oral morphine for pain relief was one of the major advances of this endeavour. Soon, the World Health Organization was to crown these efforts by recognising palliative medicine as an important and necessary sub-specialty. In line with this it recommended a ladder of pain relief where opioids like oral morphine were considered absolutely essential to good pain control.
Palliative medicine
We are relative late starters when it comes to palliative care and it is only in the 12th Five Year Plan that a provision has been made for it at the instance of the Ministry of Health, Government of India. It is yet to be taught in medical schools, though the Medical Council of India had some time ago announced an MD in Palliative Medicine. While this is certainly a step forward, it will have little meaning if it is not accompanied by easier access to morphine. Current licensing procedures are daunting which is why there is a generation of medical practitioners in this country which has had no training or experience in using it.
The NDPS Bill 2013 seeks to undo this by simplifying licensing procedures for India as a whole. Till now it was left to the discretion of each State and Union Territory to do this with the result that the country presented a chequered picture with most States opting out. By passing the NDPS Bill in the coming session of Parliament, our legislators have an opportunity to right a historic wrong and show that they care.
Or else, the cry for mercy killing will grow, especially from those in pain, and there will be no stopping it.
(Harmala Gupta is founder-president, CanSupport; harmalagupta@cansupport.org )
