Addressing the “massive need” for palliative care in West Bengal

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As well as working at SGCC&RI, Hannah ran a small clinic once a week in the centre of Kolkata for the Eastern India Palliative Care (EIPC) project.

The aim of EIPC is strategic implementation of palliative care throughout the state of West Bengal; establishing services and training both healthcare professionals and volunteers in palliative care. 

Linking UK and India for palliative care learning

Dr Sanka Mitra (Consultant Oncologist in Brighton & Sussex Hospital and founder of EIPC) initiated a link between UK palliative care experts and the SGCC&RI. Last year Dr Mitra created a job for a UK GP registrar to work in Kolkata. 

Keen to gain experience in palliative care and to see how it is provided in different contexts, Hannah applied for the role. She spent a year working at SGCC&RI, seeing patients as well as helping to deliver the training programme run by EIPC in the hospital.

The aim of the post is for UK doctors to gain experience working overseas, whilst helping establish and improve palliative care services in Kolkata. Hannah says: “Many Indian doctors and nurses haven’t heard of palliative care. In West Bengal there is a big problem in recruiting staff to do this work.

“At the moment in India, there is no palliative care training as an undergraduate, and only a small number of doctors will do it as a postgraduate specialty. But we’ve found when doing the courses at SGCC&RI that there is quite a lot of interest.”

Hannah is quick to point out that she is learning as well as teaching. The posts on her blog, Palliative Care India, are evidence of this. She initially visited Pallium India in Kerala, where pioneer Dr Rajagopal has developed a model palliative care service for India. She spent four weeks shadowing the team and learning about how the approach differs to the UK.

Human suffering

Speaking about the need for the EIPC project in West Bengal, Dr Mitra had noted: “The poor die in agony in neglect, the middle class die in agony in ignorance and the rich die in agony on a ventilator. No one gets a dignified and pain free death.”

This is something that Hannah has witnessed first-hand. In a recent blog on compassion, she points out that: “In Kolkata, and this hospital, the level of human suffering is far beyond anything I have experienced at home.”

Hannah tells me a story to illustrate this point. The husband of a patient who, having been sent home with advanced cancer, a prescription of paracetomol and the hopeless and inexcusable phrase: “There is nothing more we can do,” was dying in excruciating pain on the concrete floor of her home.

He had picked up a pamphlet from one of the many information kiosks run by EIPC in the local government hospitals. The aim of the information kiosks is to offer the patients information about palliative care, and help them access medical and social help, including referrals to the EIPC clinics. This gentleman had seen a kiosk in a government hospital and had asked about palliative care for his wife.

He came to see Hannah at the Kolkata clinic, saying his wife couldn’t come because she was in too much pain. She couldn’t move, she wasn’t eating or drinking. Hannah says: “It’s very hard in that situation to know what to do, I gave him some painkillers from the clinic, but I knew that we really needed to see her.”

The EIPC team managed to arrange a home visit with Dr Dam, a consultant anaesthetist and palliative care physician, the next week, and Hannah went along with him.

This family were incredibly poor. They – unlike many others – had somewhere to live, but it was a ‘household industry’ – a single room out of which a business is run, but which also serves as a family home.

This particular house was an old bookbinding business. There was a huge press in the middle of the room which took up most of the space, and the lady was lying on a concrete floor which was her bed.

She was only thirty years old, suffering from advanced breast cancer, with a gaping wound where her left breast should have been. There was a terrible smell coming from the wound, and the lady was in a huge amount of pain.  

She couldn’t sit up, couldn’t sleep, couldn’t eat and couldn’t drink. Dr Dam gave her an injection of a painkiller, antiemetic and sedatives which he uses as a substitute for morphine.

Poor access to morphine

Hannah says: We weren’t able to give her morphine which was really frustrating!” Although safe, cheap and effective, because of obstructive licencing laws, morphine is very difficult to access in West Bengal and most of the rest of India. “Some hospitals have it, like SGCC&RI,” says Hannah, “but when you are practicing independently, the licencing is very complicated.”

Hannah and Dr Dam gave the lady the injection, cleaned and dressed her wound, and spoke to her husband. The couple’s nine year old daughter sat in the corner, watching these new people care for her mother.

Hannah said: “Those kinds of situations are incredibly sad. Before we got there, I don’t think she had any pain relief whatsoever. She may have been taking paracetamol, but her pain was so severe, I don’t think that was even touching her.

“Seeing that level of suffering is really shocking. You just wouldn’t see a young woman dying of cancer without any support at all in the UK, and so for me, that is why the work being done by EIPC is so essential.”

The work of EIPC

EIPC was set up by Dr Mitra is response to the lack of palliative care in West Bengal. The need, says Hannah, is “absolutely massive.”

Almost 80% of the patients presenting with cancer in West Bengal already have stage four cancer, as patients often can’t afford treatment or will seek alternative  treatment, only accessing hospital services when it is too late.

But if 22% of people in Kolkata live below the poverty line and these and others in West Bengal aren’t accessing any healthcare at all, why support palliative care?

Hannah reminds me that, because of this poor coverage of general health care, people present late with diseases that may have been curable, but now need palliative care. Also, as a service and a resource, it is a relatively cheap to provide.

The vision of EIPC is to create a model of providing palliative care that works and which can be rolled out across West Bengal, to teach doctors, train trainers and to lobby policy makers to include pain and palliative care policies in the state legislation.

During her time In Kerala, Hannah observed the work of an “exemplary” home care service. This service is relies on volunteers from the community who are trained in palliative care, who can make a large contribution to a holistic care.

This, argues Hannah, could make a huge difference to so many lives, reduce suffering, reduce pain, and give people who have experienced an awful lot of suffering, some dignity and pain relief towards the end of their lives.

In palliative care, says Hannah, you should be seeing patients from diagnosis, not just those in the terminal stages of their disease. “At the moment, we see mainly cancer patients at a very late stage. It would be great to be able to broaden the scope of palliative care services in Kolkata to include patients with other diseases and also start to see patients and families earlier”

Find out more about the Eastern India Palliative Care project online.

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