Advocacy, advocacy and advocacy

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His question was born out of the philosophy of life that he had lived. He believed in naturopathy – living with nature, being its friend, not abusing his body with tobacco, alcohol or the chemicals in fast foods.

He had been a vegetarian all his life and that life had done him well right up until he was 64, having never had a serious illness in his life. Now, with advanced cancer, pain had driven him to me.

I embarked on a tedious explanation, starting by agreeing with him about how pain is essentially protective, going on to how it becomes senseless when it has ceased to be a warning sign.

Though he had nothing to do with medicine, I invoked the phrase pathological pain and explained what I meant. Though he was not totally convinced, he listened and went on asking numerous questions.

My colleague nudged me. I divined his meaning. There were other patients for whom he needed my help. How much time was I going to spend on this gentleman?

Anyway, you cannot force pain relief on anybody, can you? If he does not want it…? Were we not violating his autonomy by trying to persuade him to accept medicines that he did not want?

There is sense in both these points. The core principles of medical ethics include justice – fair allocation of available resources, including time. Was I being unfair to others? Was I trying to challenge his autonomy?

However, as I pointed out to my colleague afterwards, withholding explanations in this case would be cruel.

Autonomy has to be tempered with weak paternalism. The man has a right to know; his autonomy has to be exercised when he is in possession of as many facts as he wanted and needed.

Mr Swamy was asking questions keenly. We would be less of doctors if we failed to recognise the doubts in his mind and if we did not share with him the facts in our possession.

And the principle of justice does not mean equal allocation of time between patients; some people need more.

But it was not only his doubts that I had to overcome. He had been given a lot of false information by the medical system – that all pain killers damage the kidneys; that opioids might give him pain relief but would convert him to an addict.

His fear that it would be against nature resonated so well with all that misinformation. It was a revelation to him that opioids occurred naturally in your brain, that nature catered to body’s need for pain relief by giving enough to deal with everyday life.

At the end of a half hour, Mr Swamy accepted a trial of morphine. Another battle won.

Our efforts to improve access to pain relief in India are a quarter of a century old.  

It took us that long to move from access to pain relief being virtually non-existent to today’s state of creeping up to reaching 2% of the population.

In the year 1998, only 47kg of morphine had gone out of the Government Opium and Alkaloid factory, the only source for medical morphine in the country.

In 2014, it had come up to 278kg. 2% of the 1.2 billion population is a lot of people. But 98% without access is a lot more.

After decades of advocacy, the Parliament of India amended the Narcotic Drugs and Psychotropic Substances (NDPS) Act in 2014.

Compassionate and hopeful friends ask: “Does everybody in India have access to pain relief now?” The sad truth is, in two years, hardly anything has changed.

As we have always known, access to pain relief is not just a matter of overcoming regulatory barriers. Opiophobia is entrenched deep in the minds of professionals, bureaucrats and the man on the street.

We achieved what we could by evangelising among those who were in power and those whom we could reach. A different set of lawmakers and bureaucrats would occupy the chairs later. The advocacy must go on.

In the matter of education of medical and nursing professionals, we have only scratched the surface. A lot more people must learn of palliative care and the need for access to essential medications.

We do not know what the critical mass is. But we suspect that when we have reached a certain percentage of people and removed needless fears, the access-to-pain-relief-curve might start climbing.

It will take a lot of time and effort; resources will be hard to find; but there is no other way. Each person like Mr Swamy or his doctors has a different set of questions.

We have to keep working away at advocacy.

You can follow Dr Rajagopal’s work on the Pallium India website.

*Name changed to protect anonymity

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