Hospices across borders 4 – Engaging young hearts and minds in palliative care

In the fourth and final part of her report from the Institute of Palliative Medicine in Kerala, southern India, Jackie Butler finds out why young people flock to help the organisation and how their volunteer model is a global inspiration.

“I think of life as a book which has many chapters, with dying and death being the final one, but each chapter is as important as the others,” declared 18-year-old Hajera, the wisdom of her words belying her own tender years.

A first-year student of English Literature at Kozhikode’s university, she spends nearly all her spare time at the city’s Institute of Palliative Medicine, where her father is a doctor.

Hajera devotes herself to helping with patient care and fundraising projects and she’s now taking a course in psychosocial support to boost the skills and understanding she can offer those who are approaching death and their families, both in the inpatient unit and in their own homes.

But it’s not only this valuable volunteer role that brings her here on the bus after college every weekday with some of her friends. It’s the feeling of camaraderie that comes from regularly meeting dozens of people her own age who, like Hajera, thrive on the feelgood factor of giving back to their community and trying to make life better for those whose time is limited. It’s clear that she, and the dozens of others visiting on a regular basis, get back as much as they give.

“IPM has given me the freedom to do my own things. I can come here whenever I want, and I can help others. The atmosphere here is so calm and peaceful and everyone is friendly,” she said.

“We also go to Death Cafes where we listen to people talking about their experiences around death and listen to stories about patients who have died.”

Hajera’s mature, matter-of-fact manner was echoed all around in the throng of young people who gathered outside the institute each evening during my visit earlier this year. Wielding paint brushes, balls of yarn, rolls of string, bamboo canes, fairy lights, sheets of card, planks of wood, saws, screwdrivers and pickaxes, they were in the thick of preparations for the Curios cultural carnival, officially launched by major Kerala movie star Mammootty, a patron of the Pain and Palliative Care Society.

It takes a huge amount of work to set up IPM’s major fundraising event for the year, a mix of music, dance, literature, art and food, which regularly attracts 40,000 people to the grounds over three days.

Some volunteers sat in clusters just outside the institute’s entrance laughing and joking as they created enormous dreamcatchers, sparkly stars and strings of colourful pom-poms to hang from branches, or made signs bearing the slogans #becauseicare, #celebratingcompassion and #beamedicine to pin on tree trunks and fences.

Others hung out in the jungle-like undergrowth, gleefully digging holes and hammering nails into temporary structures against the lively soundscape of bhangra blaring from a blaster stereo.

It crossed my mind that the noise might disturb the patients in the unit at the back of the complex, but there were no complaints and all the staff and visitors seemed delighted that they were there and prepared to engage with death, dying and hospice care while helping in a hands-on way.

Jasim was an engineer, but now works full time for the Captains Social Foundation NGO, promoting volunteerism and empowering young people, and he helps to coordinate projects at IPM.

“Our role is to encourage young people to look at how to solve problems in society through volunteering and use their creativity and potential to benefit society. They gain multiple talents by taking part in these activities,” he said.

“Here in Kerala many issues like drug abuse are becoming worse and young people are not respecting society. We want them to move from there to the next level of social commitment. There is so much future in the social sector – there is a lot of work to be done and the IPM is a great place to do it.”

National Youth Worker Rifadh agrees. A 25-year-old entrepreneur with his own distribution company, he has been a volunteer since he was a teenager and working with IPM for five years.

He said: “I feel compassionate about people. I talk with patients about death. We face real life here at the institute – the things that make us human. We visit people at home and in the inpatient unit. I work with the doctors and nurses. I am friendly and I listen, which is one of the best qualities. My presence will be happy for people.

“It works both ways. I am the person who needs the patient too. Doing this cures my heart as well. When a patient dies, I will be very sad, but gradually you learn to cope.”

He was inspired to get involved after spending time volunteering in a tribal village outside Kozhikode where he had a conversation with a five-year-old boy.

“I asked him one day what he wanted to be in the future. He said he wanted to be like me. I was inspired by that answer, and I have since taken on many activities to help others.”

For 23-year-old trainee doctor Anu, volunteering has had an important impact on her mental health and her social life, and she described herself as “addicted” to helping out at IPM, whether that’s making dreamcatchers or sitting by a patient’s bedside.

“I find that everyone coming here to volunteer finds something meaningful that they are missing; it gives us better satisfaction in life. I started coming here to meet like-minded people and the exposure is so great. We have quality times and find a community to relate to,” she said.

Anu felt quite isolated coming away from her home in Kollam to study at Kozhikode’s esteemed medical college, and was receiving counselling, but she found coming to volunteer at IPM was much better therapy.

“Empathy to patients is not discussed in my training, but here we talk about these things. Doctors often have difficulty communicating with patients. Here they train us how to be empathic and a good listener,” added Anu, who has undertaken IPM’s psychosocial course for volunteers while continuing her medical studies.

“I experienced someone dying here for the first time and it shook me. Hearing about this death I went into a dilemma about whether I was the right person to be a doctor and deal with this every day. But I decided I wanted to carry on and take a special interest in palliative care.”

The young volunteers’ time and energy is incredibly important to the success of the Institute and helps to raise the 20 million rupees (around £200,000) it costs to provide its services, which include inpatient and home care, medicines, and food, food packs for poorer patients, training programmes for doctors, nurses, volunteers and students, research and development, palliative care courses and creating compassionate communities across the world.

Sree Kumar, is a businessman who has worked all over the world. In retirement he has returned to his Kerala homeland and devotes his time to the vital voluntary position of secretary of the Pain and Palliative Care Society (PPCS), the charity that oversees the day to day running of IPM and its funding.

He sees multiple benefits in getting young people involved. As well as helping on a practical level, they spread awareness and open conversations around death among their peers, and some are inspired to take up careers in palliative care.

“We run a lot of youth-led programmes and they come up with so many great ideas.We now have a Biriani Challenge, a Cake Festival and a Sweet Festival. We cook and pack the food here that people order, and the volunteers deliver it to people at their homes. There are campaigns in colleges and workplaces, like Skip a Tea where people give us the money they would have spent on a drink, and we will use it to buy medicines.”

Not all volunteers are young. They are lucky to have people of all ages and from different walks of life giving their time in a myriad of ways, including artists, film producers and actors who utilise their popularity to spread awareness and publicise IPM’s events.

Every individual who volunteers is highly valued and encouraged to find the role that suits them best. Widow Lekshmi has been working part-time in the IPM shop for several months. When I passed by, she was happily folding scarves and arranging gorgeous handmade bags for sale.

“My husband was ill and died here,” she told me. “I wanted to do something to help but I didn’t feel I could go back into the inpatient unit. This kind of helping I can do.”

The PPCS has only one charity shop and that’s in the corridor of the institute, although volunteers do set up stalls at local events selling new and second-hand items, including clothing, and there are collecting cans in many local outlets. Most of the items on the shop shelves are new, some donated or supplied at discount rates by businesses, with some crafts, pens and umbrellas made in house by disabled and life-limited patients who come for respite care.

Like St Luke’s, the palliative care and social support provided free of charge for anyone in the community is the top priority, although IPM’s vision extends well beyond Kerala’s network of volunteer-run palliative care centres.

Sree Kumar said: “The concept of palliative care is not fully understood and there are still too many people dying in hospital intensive care units and so on. As well as running courses, both face-to-face online, we support the setting up units in other parts of India, Sri Lanka and beyond.”

People come here from all over the world and co-founder Dr Suresh Kumar now spends a lot of time visiting other states and countries to help them set up their own initiatives. Compassion and generosity lie at the heart of all they do.

“We train people first and then we support them with meetings or courses. We charge a minimal amount for our basic courses – 125 US dollars for six months. It is about reaching people even if they can’t afford it. If candidates are in very poor countries in Africa, for example, we will give free admission. For the masterclass we subsidise travel costs for poor countries.”

Visitors like me also get the warmest of welcomes. My sincere thanks go to everyone who gave me their time and their thoughts, showed me around, allowed me an insight into this very special place 5,000 miles from St Luke’s and made it feel like a home from home. I’ll be sure to return next time I’m in Kerala.