'Over 99 pc Indians don't have access to palliative care'

Over the years, as the number of ailments and diseases known to man has increased, medical field and health care has also evolved with time. One such branch of medicine is palliative care, or the treatment of severe pain and enabling a person to live more comfortably, while at the same time combating the ailment.

Palliative care, first introduced in the United Kingdom, is merely 25 years old and is almost unheard of in India.

With the Human Rights Watch releasing a report that says hundreds of thousands of people all over India are unnecessarily experiencing pain due to restrictive drug regulations and lack of trained doctors, rediff.com's Krishnakumar P spoke to Dr M R Rajagopal of Pallium India, on the hurdles in the way of palliative care in India and ways to overcome them. 

Broadly, what is palliative care?

It should be something that integrates into medical practice. It should form an integral part of everyday patient management with the objective of care and removal of distress. So, it is an obvious thing that it should be part of routine management.

Why is it important?

Palliative care is about improving the quality of life. Unfortunately, in India disease-oriented treatment does not have much space for palliative care.

What is the state of palliative care in India?

More than 99 per cent of people who need it do not have access to it. The idea in India is that if you have cancer and it can be cured, you suffer the pain while you get cured. If it cannot be cured, then you will have to go through the pain till the end of your days.

What is the attitude in general when it comes to palliative care? What does the patient think about it? What do the doctors think about it? And what does the family think about it?

If you are asking specifically about palliative care, most people do not know about it.  Even in a state like Kerala, which is very good in terms of palliative care, it is very often wrongly associated with terminal care.

There is also some kind of stigma associated with it. It is thought that it is part of the dying process.

Regarding the various kinds of people, those who have received palliative care find that it makes such a huge difference. It enables them to live again.

Doctors and the medical community by and large take a long time to change. In fact, most doctors in India do not have any idea about palliative care. They think it is just something where you put the patient to sleep and that sort of thing.

For families, it is generally a huge load off their minds. Because when a person is ill, the whole family suffers. Even though the patient eventually finds it possible to come to terms with it, the family carries it long, even after the particular person is gone. The family often may have seen the person suffering for three or four months. When a patient is given palliative care, the family is immensely relieved.

Is there some sort of mental block against it?

First of all, there is this unrealistic fear of morphine. The field itself is merely a quarter century old. Most people have not accepted that or are unaware of the current knowledge. There is the unrealistic fear of addiction to morphine.

What are the hurdles that you face in India?

The lack of any policy on the part of the government about this is the biggest hurdle. The regulatory barriers to accessing drugs like morphine and the lack of professional education are the biggest problems.

What are these regulatory barriers?

The Narcotic Drugs and Psychotropic Substances Act of 1987, aimed at preventing abuse, effectively completely stopped access to the drugs. This act brought in very complicated procedures. So much so that people stopped asking for morphine.

We have generations of doctors who have qualified and grown up without seeing morphine. These regulations do not effectively prevent abuse, but prevent the medical use.

What needs to be done to improve things?
The regulatory part has been cleared. The government of India's Revenue Department was very proactive and in 1998 asked the state governments to simplify these regulations. Now, it does not require a legislation, only orders.

But after 11 years and 20 workshops by the palliative care community, only 14 states and union territories have put together the required apparatus. In 21 states and territories, it has not been done. One of the things that needs to be done is for these states to simplify regulations on narcotic substances.

But that by itself will not make any positive change. There needs to be proper education and a system of delivery of care.

Even in states like Madhya Pradesh, which simplified regulations, morphine is not very easily available. In Sikkim and Tripura, there is no morphine at all, even after the Centre relaxed the rules.