India’s father of palliative care gently shakes Australia with his insights and wisdom

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India’s father of palliative care gently shakes Australia with his insights and wisdom

The man the New York Times describes as “the father of palliative care in India”, Dr MR Rajagopal, has arrived in Australia on a national speaking tour. He is attending screenings of a documentary about his work; Hippocratic – 18 Experiments in Gently Shaking the World.

Dr Rajagopal took time out to speak with Palliative Matters.

You describe the suffering in the developing world as being “unimaginable”. For people who have no real sense of it, can you help us understand?

It starts from very simple things, like if you go for an operation in a hospital. In this country [Australia] you would automatically expect your pain to be managed. In India, it is very unlikely to happen. Less than five out of every hundred people would have their pain managed after surgery.

The same holds true for cancer pain also. It is estimated less than 5% of people have their pain managed. Living with cancer, the misery can be unimaginable when there is not access to pain relief.

Most of us are limited by our powers of imagination in [understanding] the severity of pain. When there is no pain management, pain keeps soaring.

I have had a person telling me that his pain was like somebody driving a nail into his ear. The hammer would keep on driving the nail in for 10 minutes and then it would stop, only to start again a few minutes later.

For one woman, her pain was like somebody continuously putting hundreds of needles into her feet all the time. The extent of suffering pain like that causes is not easy to imagine.

My colleagues and I repeatedly see people coming to us with a scar around their neck. They have tried to hang themselves and been saved. In India, the National Crime Records Bureau says an average of 25,000 people commit suicide every year due to health-related reasons alone. One-fifth of suicides in the country are for health-related reasons.

You’re hoping that the film will bring global attention to the need for a strategy for sharing resources more equitably, so that poor people aren’t left to suffer. Can you give a sense of what that strategy would look like?

In my state of Kerala, in India, there is a palliative care policy. The state has accepted that it has a responsibility to treat pain and suffering.

Our state has only 3% of India’s population and it is the only state where effective policy has been implemented. In Kerala, we have not solved all the problems. It is still bad, but it is so much better than the rest of the country.

So, the strategy would accept that the state has a responsibility not only to treat disease but also to relieve suffering. It has to integrate palliative care into health care; when a person comes into the hospital the system would try to identify the different domains of suffering, whether it be pain or other symptoms, or psychological, social or spiritual suffering.

It would make medicines like morphine available. It would ensure education in pain management and palliative care was given to medical and nursing students and also improve public awareness. It would put palliative care into the country’s health budgets.

In the short film, Working in Palliative Care, you say you treasure a photo of a four-year-old girl kissing you on the cheek. She sat up and smiled and started once her agonising pain had gone. Can you tell us about a few other patients who have stood out in also reminding you of the joy, laughter and happiness that is part of palliative care?

I remember an elderly gentleman whose wife was asking me to kill him because she could not bear to see his suffering. The next day [after I treated his pain] he could sit up and have his breakfast.

Initially he could not accept incurability, but eventually, when we helped him to come to a state of acceptance he had a few things to do. He made arrangements for sharing his property amongst his wife and children. He made sure that all the grandchildren came and received a kiss from him. And then he wanted to visit the primary school where he had studied. He had had only primary education, nothing more.

We encouraged the family to fulfil his wish. They were initially reluctant because he was a sick man, but he travelled to the school on a Sunday for a tour. He showed his wife where he and his friends used to have lunch.

As they were driving back home he said something like ‘I am at peace now’.

Even though the family would be sad [when he died], they would still have some pleasant memories for the rest of their lives of the good times they have had together.

When somebody is in pain, they suffer and their family forever would remember the days of suffering. When the person is in pain their character changes. They are transformed into a person who is preoccupied with themselves and has no concern for others. That will also leave painful memories for the family.

You’ve talked about the lack of regulation and monitoring across India’s health system and the impact of unchecked profit-making. What will it take to change that?

That I fear is not just India’s problem. I feel it is a global issue, that healthcare has been transformed, especially in the last quarter of a century, to a healthcare industry.

Now the healthcare system anywhere in the world is aimed at profits, by and large. So this is an issue. From the point of view of a businessman, the more the profit that he can make out of human suffering the more successful he is.

Tomorrow, when my time comes, I fear that the healthcare system may aim at making profit out of my suffering, rather than relieving my suffering. That becomes particularly horrendous in the context of end-of-life care.

In our country, the poor die better than the rich. The poor may die in pain, but they would be surrounded by the family, whereas the rich die painful deaths but with a tube in every orifice and machines breathing for them, all alone, isolated in a cold room. And their dying process is stretched out from days to weeks so that both the extent and length of the suffering increase.

One thing that will change that is more discussion about human rights, for life with dignity, and death with dignity. These discussions will have to be actively facilitated because ordinarily, no-one likes to contemplate diseases and death.

Very often change happens because of public demands, but the people who are suffering have no voice. So, unless you and I are ready to be their voice, things will not change.

What Mike and Sue are doing [Michael Hill and Sue Collins from Moonshine Agency] is vitally important – the Hippocratic movie and their other palliative care movies like LIFE Before Death, and Little Stars.

In Australia, some people face difficulties accessing palliative care. Mike Hill from Moonshine Agency says you’ve achieved amazing things in your home state of Kerala, India, achieving almost universal access to community-based palliative care; something you’re now working to achieve nationally. What can we learn from your successes?

It is not as if we have achieved everything that needs to be achieved in Kerala. There is some kind of access to palliative care. It is not of the quality that you deliver in Australia. But something reaches people all over the state.

That happens because it was not just doctors and nurses doing it. The public – the community – got involved. We welcomed them into our fold and made them our partners. It became so popular and started spreading so that the government then came in and became ready to form policy.

The care delivery involves people in the localities, so the public in individual networks form palliative care groups and take responsibility for people who are suffering in their own communities. If there is a person who needs to reach the hospital but cannot afford transport the community may make it happen.

In many places, they run the palliative care service and we doctors and nurses support their particular needs. Our medical and nursing team visit them once a week, but during the rest of the week, they may act as a link between the family and us.

In some places, volunteers learn basic nursing chores like care of skin, management of dressing. If somebody is totally helpless they will give companionship and love. So while the doctors and nurses can look after the physical needs, some of degree of psychological, social and spiritual support is provided by the local community.

Sometimes when I see your hospices I see very lonely people and it happens in our country also. In India, volunteer groups are active. They are helping out with illness. Maybe affluent countries that have this problem with companionship or loneliness, can also be supported and helped by the local community.

In Australia, we have fewer than 200 palliative medicine specialists, most of whom are based in larger cities. What can we learn from your experience, in terms of overcoming specialist workforce issues?

Palliative medicine specialists, with a proper university degree – in India you can count them on the fingers of one hand. It is very new. There are very few opportunities for those who are interested. Things are very bad here in our country.

I’m not very proud of the lack of participation from the broader medical community in India. A few hundred doctors have palliative care training, not with a degree or diploma, but usually a few weeks of training. What I hope will happen in my country is that every doctor and every nurse who have completed their basic medical or nursing qualifications would have reasonable competence in providing palliative care. We have not achieved that, but maybe here in Australia it is more achievable than in our country. Maybe all countries have to achieve it.

“Somewhere, medical practice lost a bit of the heart. It’s all brain.” You said that in the context of the developing world, but do you think it is an issue in developed countries like Australia as well? What consequences flow from this focus on intellect rather than emotion?

In the last half a century the world has developed new diagnostic tools like MRI scans and CAT scans. So by looking at the images, doctors can make a very precise diagnosis. That has also meant two side effects.

One, the person-to-person interaction between the doctor and the patient reduced. The doctor would be interacting with the images on a screen more than with the person. And then secondly, the doctors learn to concentrate more on diseases, rather than the person. Treatment has become more disease focussed. So the doctor now has so much more scientific knowledge of diseases and less and less knowledge about human beings.

From the first days of their medical studies, doctors see little heartless kinds of medicine being practiced. So doctors find it easy now to say, ‘There is nothing more to do, you can go home’ [rather than providing palliative care]. Or worse still, they sometimes keep on attacking the disease, even when they should know that treatment is likely to be futile. Such heartless pushing of aggressive treatment helps only to worsen human suffering.

Hippocratic – 18 Experiments in Gently Shaking the World is screening around Australia during October. To see when it’s on, and where Dr Rajagopal is speaking click here.

To host your own 90-minute screening at a theatre near you, click here.

From 14 October, you can access the film on VOD (video-on-demand), DVD/Blu-ray and on campuses via Kanopy. Click here for details.