If access to palliative care and pain relief are human rights, where are we going wrong?

Categories: Policy.

“I was told it was caused by radiation necrosis of the bone. I am a doctor myself, though not a clinician. The cancer hospital was full of doctors who had been my students. I was cared for; people gave me respect and attention. But not pain relief.

“There is nothing that can be done about it, I was told. It would get better with time; I had to be patient. Tell me, how do you muster patience, when those nails are being driven into you?

“You say palliative medicine can take care of pain like that. You say the World Health Organization (WHO) analgesic ladder has been in existence for a quarter of a century. Then why did I have to suffer pain like that? Why was I told that the pain was inevitable?”1

Dr Bhakta (name changed for anonymity) is just one of millions of patients around the world who suffer indescribable pain and who, for various reasons, cannot access pain relief.

The problem of pain

Access to palliative care and pain relief is a human right under the right to the highest attainable standard of physical and mental health (EAPC, 2013), yet 66% of the world’s population have virtually no consumption of strong opioids and only 7.5% of the population live in countries with ‘adequate’ opioid consumption levels (WHO, 2010).

The UN Special Rapporteur on Torture, Cruel, Inhuman and Degrading Treatment and Punishment wrote in a joint letter with the UN Special Rapporteur on the Right to Health to the Commission on Narcotic Drugs in December 2008: “Failure of governments to take reasonable measures to ensure accessibility of pain treatment, which leaves millions of people to suffer needlessly from severe and often prolonged pain, raises questions whether they have adequately discharged this obligation. (UN, 2008).”

The case of India

With the exception of the State of Kerala, one of the model case studies for palliative care and pain relief worldwide, India is a country where excessive regulations make it extraordinarily difficult to obtain opioids for the treatment of severe pain.

Although steps are being taken to simplify this process, many barriers still exist which are preventing patients from getting the pain they need, effectively trapping them in a state of torture, as experienced by Dr Bhakta.

In 2014, India amended the Narcotic Drugs and Psychotropic Substances (NDPS) Act of 1985, transferring the powers for making rules regarding Essential Narcotic Drugs from State level to the Government of India. This meant that, instead of each of the 29 states having a separate system, the whole country now has a uniform system governing the prescription, stocking and dispensing of essential opioid medicines.

Dr Rajagopal, Chairman of Pallium India, said: “According to the NDPS Act of 1985, each state had a separate set of rules. In every state, a pharmacy or a hospital had to have four to five different licences, to be able to procure morphine. Each of these licences had differing periods of validity and so it was very common for one to expire by the time the other was obtained.

“This, understandably, led to such difficulties that most institutions stopped using morphine. From 1985 to 1997, the consumption of morphine dropped by 97% to a mere 3% of the already lamentably low consumption of 1985.”

Dr Rajagopal welcomed the change in legislation, but cautioned that there is still much more work to do before India can be said to have realised its citizen’s right to adequate pain relief. He said: “The new system will mean that the whole country will have a single, common system. Only one agency, namely, the drug controller of the state, will be involved in approving ‘Recognized Medical Institutions’ which can stock and dispense opioids like morphine.

The Times of India recently reported a further simplification of the process of accessing opioid medications whereby five essential narcotic drugs (END) would be available on a single licence issued by the state drug controller’s office. Previously, six different licences were needed for institutions to be allowed to procure, stock and prescribe them, making them almost completely inaccessible for pain relief and palliative care.

Dr Rajagopal said: “The single agency and single licence means that a lot of unnecessary bureaucratic tangles are removed,” however, the amended laws surrounding morphine and other strong painkillers retain glaring inadequacies.

He explained: “According to the NDPS Act of 1985, which remains unchanged even in the current amendment, if a doctor or a pharmacist is found in possession of ‘illegal’ morphine, he or she is liable legally to receive the same penalty as a drug trafficker.

“This means that a genuine clerical error would attract the same rigorous imprisonment meted out to a drug trafficker. Unfortunately, to the best of my knowledge, currently there has been no move on the part of the government to change the penalty clause.”

The need for education

Changing legislation to simplify the supply of opioid pain medications, although a step forward, will not on its own increase access to pain relief, argues Dr Rajagopal. “Two generations of doctors have not even seen morphine,” he says. “Pain management, as a science, is not taught to medical students and not practised in hospitals.

“The removal of the legal barriers would not immediately result in changes in pain assessment and prescription practices, unless a massive advocacy campaign for professionals can be launched. It would also be important to improve public awareness about pain, its adverse consequences and the safety of opioid medicines as painkillers.”

Access to pain relief is a human right, and these positive changes are very encouraging. However, unless governments take a holistic approach to improving access, by not only changing laws, but also educating healthcare workers and the public about pain relieving medication, they will have radically failed in their responsibility to keep their citizens free from the cruel, inhuman and degrading experience of pain with no relief.

1. Case study: Rajagopal M.R. (2011). Journal of Pain Palliative Care & Pharmacotherapy. 25(1):25-8.