BLOG: Hospices across borders – How India’s pioneers made a global model

St Luke’s Jackie Butler discovers intriguing differences and reassuring similarities visiting a hub for palliative care and compassionate communities, 5,000 miles from Plymouth.

Shuddering to a halt outside Kerala’s Institute of Palliative Medicine on a searingly hot and dusty afternoon, I couldn’t help wondering whether my rickshaw driver had taken a wrong turn and delivered me to the art college by mistake.

Around a porticoed entrance, reminiscent of grand residences from the days of the Raj, dozens of Mod-style scooters were double parked, jostling for a shady space. Amid a babble of excited chatter, laughter and blaring Indian pop tunes, a crowd of animated young people spilled out through the surrounding jungle-like gardens.

As first impressions go, it was both surprising and heart-warming to find a party atmosphere outside a palliative care centre. The scene underlined how life goes on side by side with death, in the same way that Indian culture traditionally keeps the sick and elderly in the heart of the family.

I’d left behind Kozhikode’s noisy city centre, its parades of colourful shops and stalls, beeping horns, and hair-raising near misses as an endless flock of people strolled the streets and darted across roads in 34C heat.

Easing into the sprawling, greener, suburban territory of the esteemed Medical College, my bright yellow tuk-tuk taxi trundled by a long row of modern multi-storey hospital units where a sea of patients, relatives and staff talked on mobiles, munched spicy snacks out of newspaper cones, rushed to appointments, ran for overflowing buses, or propped up bandaged friends. Some pushed wheelchairs or lifted poorly patients out of ambulances on stretchers – a series of dramatic snapshots, come and gone in a flash.

As we passed the huge maternity centre, a young man in smart checked shirt and crisp white loincloth strode proudly out of double exit doors, grinning from ear to ear. With one arm he gently steered his wife through the crowd to a waiting car; in the other he held a bundle of snow-white blankets with a tiny face poking out – a new life just begun.That image of a baby meeting the world for the first time stayed with me as the chauffeur of my three-wheeled chariot finally turned into a winding side road, bumped a few hundred yards down a leafy driveway, stopped outside what he declared was my destination, unloaded my suitcase and demanded 300 rupees (£3).

In a place where people come to find peace at the end of life, I hadn’t expected such a vibrant welcome. Dozens of youthful smiling faces surrounded me, one girl explaining that they were creating the structures and decorations for Curios, the centre’s major annual fundraising festival – actually only a fragment of what these incredible young volunteers contribute, but more of that later. Eager to create a good impression and point me in the direction of my kind host Ilyas Hameed, co-ordinator of the learning academy, they gave me an instant flavour of what a unique and special place IPM is.

I’ve been coming to Kerala for more than a decade, enchanted by the natural beauty of its sea and forest landscapes, its historic towns, and the humanity of its people. In terms of location, scenery, and atmosphere, this is India’s Devon and Cornwall. Literacy here is around 94 per cent – the best rate in the whole of India – basic health care is free, and social reform, regardless of religion or caste, has been a priority on the local government agenda for decades.

So, I wasn’t too surprised to discover that the state is also streets ahead in terms of end-of-life community care and that a forward-thinking centre of excellence, cited by the World Health Organisation as an aspirational model for the rest of India and beyond, was rooted in the city I’ve flown into on many occasions. Of all the palliative care in India, some 90 per cent happens in Kerala, which is home to just three per cent of the country’s population. The opportunity to visit the hub of it all while I was on a trip nearby felt too good to miss.

Like St Luke’s, it all started with enlightened doctors on a mission to ease the suffering of those with life-limiting illnesses, acknowledging that nobody should die alone or in pain and distress. Here it was the community model that came first. Dr Suresh Kumar, who had practised in the UK, and Dr Rajagopal established the charitable Pain and Palliative Care Society in Kerala in 1993, inspired by Dr Cicely Saunders and the British and US hospice movements.

They adapted their vision to the sprawling rural geography of the state and the available resources, recognising that caring for the dying was fundamentally a social issue with medical aspects. They agreed it was important – and more practical – for patients to stay close to their families, whenever possibleFrom a small outpatient clinic in at Kozhikode’s main hospital, the society developed the pioneering Kerala Model for compassionate communities, distinguished by its efficient network of hundreds of neighbourhood palliative care groups across the state.

Led by willing and well-trained volunteers, supported by local doctors and nurses, and financed by donations – mostly regular micro amounts given by individuals – they provide free care, medication, and psychosocial support for all, while empowering close relatives to help keep their dying family members comfortable at home.

The Institute of Palliative Medicine, opened in 2003, was the ambitious but obvious next stage – a 30-bed specialist inpatient unit, with outpatient clinic and home care teams serving the city and surrounds, combined with a pioneering, high level palliative care training centre for the whole of India and beyond, both overseen and managed by the charitable society.

I got another heartening surprise as I entered the building’s cool and tranquil stone-floored central corridor and was greeted by a plaque acknowledging that Cornwall’s WB Davis Charitable Trust funded the construction of the institute on land provided by the medical collegeIt felt like a special bond linking this part of the world to our doorstep, united by the same aims and an ongoing spirit of public generosity.

Philanthropist Bruce Davis was managing director of the Davis Derby family business that had shipped thousands of Humphry Davy flame safety lamps out to India over more than a century. At home in Cornwall his interest in pain relief and end of life care following the deaths of his mother and a close friend from cancer was instrumental in the foundation of St Julia’s Hospice in Hayle in 1982.

Inspired by a nurse who witnessed community palliative care on a visit to Kerala, Bruce and the trust decided to spread their wings and pursue key projects in India. IPM was the first of many similar endeavours in India that he supported in his lifetime. Bruce died in 2018 and every year the institute awards a prestigious Gold Medal prize in his name to a promising junior doctor in the field.

After checking in at reception, it was time for a bite to eat. In the very basic canteen, they serve the plainest of foods for easy digestion by patients – thin dahl, a few boiled vegetables, a poppadom, a mound of plain fat-grained rice, with a milky chai to wash it down…not quite what I had in mind with the Arabian Sea stuffed with tasty fish and seafood down the road!

The shared table filled up around me and I found myself chatting with students taking IPM’s course for carers that’s open to all. A trainee nurse had her sights set on a career in Europe and wanted to broaden her scope, a teenage mother was keen to learn to take the best care of her Down Syndrome baby whose additional health problems mean his lifespan is limited, and a middle-aged businessman was seeking a more “worthwhile path in life”.

Two young friends from the university’s BA History course who regularly volunteer at IPM settled down opposite me to practise their excellent English conversation, putting my five words of local Malayalam to shame.

Leena, the thoughtful resident pharmacist, watched me wrestling with my bland meal and asked what curry I like and if I can take it spicy. The next morning, she arrived with a little tiffin tin packed with the most delicious homemade prawn masala to liven up my breakfast.

Five thousand miles from home in this enclave of kindness, and feeling more than a little jetlagged, I strolled through humid fairy lit gardens to my guest accommodation and a welcome rest before a couple of days shadowing the IPM clinical teams.

Meet them in the next article which you can read here.