Watching my cousin deliver a presentation at the Nehru Centre in London on palliative care a few weeks ago, I was reminded of when we had first met. With me growing up in the UK and he in India, we had not met as young children but when I was 19 in Calcutta, on my first trip to India for 15 years, and I think he was 12, at one of India’s public schools modelled on the UK. As with most of the educated in India nowadays he could, even at the age of 12, discourse in perfect flawless English, Hindi, and his mother tongue, Bengali of course. Not having much in common, I guess, at those ages we took to the roof of our grandfather’s Calcutta house to play cricket. As in many hot countries the roofs of houses are often special places, in the city yet not in the city, your own private family space, away from the grime of street Calcutta. Sometimes Calcuttans sleep on the roof to benefit from cooling breezes in the hottest parts of the year. But even there one cannot escape the sounds and the smells that make up the unique experience of Kolkata, the city of joy. Kites are flown from roofs and if there are celebrations, after an Indian cricket victory perhaps, firecrackers and fireworks are let off.Fast forward a few years, 15 perhaps, and I am at my cousin’s home on the outskirts of Calcutta. In the intervening years my cousin has become a doctor. My aunt and uncle are unfailingly kind and I have brought a bottle of scotch for my uncle. A shot is called a “peg". My uncle worked with what he called “Britishers” in the oil industry and was clearly influenced by them. After a Bengali lunch I wander around the house and find in a glass cabinet a letter in my father’s handwriting. Reading it I realise my cousin had asked advice about his future career, and my father had responded with strategies and plans. I don’t know if it was my father’s influence but my cousin seemingly always wanted to be a doctor and then a surgeon. Through hard work, and I hope some good advice from my father, my cousin achieved both his ambitions.
He passed surgeons’ exams in both India and the UK, worked as a surgeon but later switched to oncology. Not long after my cousin came to the UK my father sadly passed away. He had had a lung disease and was confined to bed in our house for a few weeks. In that time my father received excellent palliative care from the social services and care visits a couple of times a day. His end was peaceful surrounded by members of his family.
I only mention my father’s passing as my cousin, Dr Sankha Mitra, is endeaveouring to bring high quality palliative care to West Bengal in particular and trying to change the mindset in India regarding this important facet of medicine.
Palliative care is best defined as treatment and strategies to reduce pain and other symptoms, and offer psychological, social, and emotional support holistically generally when a patient has a chronic life limiting illness or is dying. A couple of years ago Dr Mitra set up a charity - Eastern India Palliative Care in UK Charity No. 1151116 (EIPC) to help fund the projects in India.Along with the focus on EIPC the evening at the Nehru Centre included a performance by the Goan soprano, Viola da Cunha, accompanied by Yukiko Osedo, and a short performance of Tagore songs by Dr Mitra's wife, Susmita. My cousin, Sankha, was first generously introduced by Professor David Oliviere who among other things lectured on palliative care. Sankha talked about what he and his project team are trying to achieve in India. I have amalgamated his presentation with my discussions with him later.
Sankha began his charity primarily because of the inequity of high quality palliative care available to his cancer patients in Sussex and the almost negligible provision in West Bengal. The poor in West Bengal often cannot get to a government hospital, and sadly die in great numbers in great pain through neglect. The middle classes, although moneyed, do not really understand the concept of palliative care and therefore die in pain in ignorance. The upper classes, as is their wont in India, throw money at the problem; patients are often kept alive on ventilators usually in great pain. Often it is a status symbol to suggest a relative had been kept alive on a ventilator for several weeks. Private hospitals in towns and cities have no interest in offering true palliative care as they are paid at an expensive daily rate for the use of expensive facilities like ITU and ICU.
It could, Sankha believes, be so different. West Bengal had up to now no real palliative care facilities. With support from UKDFID and partnerships in India and with funding from his charity EIPC , Sankha is bringing - still in a limited way - palliative care. There are a number of major obstacles: while morphine is cheap it is almost unavailable because of the draconian opioid drug rules from 1985 and few pharmacies stock morphine. Government hospital doctors are not trained in palliative care, nor are nurses and social workers. And the regional government and Health Ministry have not been as helpful as anticipated.
So, to try and inculcate and develop a palliative care mindset Sankha has set up a training centre to train doctors, nurses and social workers. What he has found is that there are almost no local volunteers to be found in a region where poverty is endemic (in the UK for example one would find volunteers relatively easily). With funds from a number of sources a training centre has been set up in a not for profit Cancer Centre in Thakurpukur near Calcutta. The Training Centre has facilities for nurses and social workers to stay, lecture halls and computer facilities. Volunteers have come from the UK and all over India to assist in the training. But one issue has been that local doctors are not keen to be dedicated to palliative care; often doctors would prefer to spend time in their own lucrative private clinics and practices. Eventually Sankha intends to have 14 training centres attached to government hospitals, 18 local palliative care clinics in each district of West Bengal and train up 1000 doctors, nurse and social workers.
These EIPC clinics are often very basic by Western standards but providing minimum standards are met they are a huge improvement on any existing facilities and care.
Interestingly Sankha gave his presentation at the Nehru Centre almost at the same time as the House of Lords was debating assisted dying in the UK which is a related topic within the scope of palliative care. It is widely felt that the law is perhaps lagging behind public sentiment and that assisted dying, within strict parameters, should be made legal.
But back to West Bengal. There are still many obstacles to ensuring palliative care is widely available. The charity needs to be able to scale effectively and ensure sustainable funding for sustaining the centres. The project will be a mix of government funding, charitable funding, NGOs and with help from (Western) volunteers. The private sector, including the Narayana Health Foundation, has shown an interest in developing its own palliative care model, but a business model not a charitable one. Sankha also wants to try and set up a social enterprise model, one that is profitable, so that profits can be used to set up and run further clinics. There has also been a strategy of informing and educating, in schools, so that the next generation can raise awareness of the availability and benefits of palliative care.
Perhaps I am biased because Sankha is my cousin and the project is active in my parents’ home state of West Bengal, but it is heartening to know that his enthusiasm and drive has already resulted in many receiving high quality palliative care when none existed. Yes, there are many obstacles to be overcome but making a start is often the hardest part: making alliances, partnerships, and getting the message out – the evening at the Nehru Centre was a part of this process.
Palliative care is a relatively basic and relatively cheap healthcare provision but one clearly that the Indian state is currently unable to deliver. So it is up to charities and perhaps businesses to step up; it requires simple facilities and by most healthcare standards basic nursing and medical care. Social enterprises are one facet of the overall equation but perhaps also some kind of insurance model may need to be fully explored. Sankha would also like his project to be the model for palliative care clinics all over India. This might be the greatest legacy for such projects, in shaming governments at all levels in creating high quality medical services provision in a country that is growing strongly, and sadly exports many of its doctors and nurses who cannot find worthy jobs and careers at home.
http://www.eipc.org.uk
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