How Keralas kids are stepping up as palliative caregivers

In 2023, when Aadhil Shah joined ACE College of Engineering in Thiruvananthapuram, he imagined a good bit of hostel enjoyable, not weekends spent mopping flooring. Now, as a palliative care volunteer, he has completed all the pieces from delivering medicines to serving to aged sufferers transfer houses. He doesn’t thoughts the work. “Volunteering was a kind of fulfilment that got here sudden,” says the 20-year-old who loves watching motion pictures in his free time or hanging out along with his hostel buddies.

IT coach Nihala Kathoon CK. too started volunteering at 18, quickly after becoming a member of faculty in Kozhikode. “Initially, I helped with fundraising and consciousness occasions. Gradually, I started aiding with affected person care and mentoring new volunteers. It quickly grew to become part of my life,” says the now 25-year-old.

Caregiving will be tiring and thankless — not one thing we normally affiliate with kids in right now’s world of AI instruments and Instagram reels. Yet in Kerala, a quiet tradition of scholars tending to the aged and terminally unwell as palliative care volunteers has taken root during the last decade, aided by local people and voluntary organisations, and by collaborations with palliative care establishments.

“Youth involvement has been part of Kerala’s palliative care tradition for the final 15 years or so,” says Dr. M.R. Rajagopal, a palliative care pioneer and founding father of the non-profit, Pallium India. What started as a community-led initiative has now discovered official recognition. In September 2024, the Kerala authorities formally inspired scholar involvement as was proposed within the revised state palliative care coverage in 2019 after advocacy by palliative care teams. In June this 12 months, the state introduced a tech-enabled Universal Palliative Care Project integrating NGOs, volunteers, nurses, and establishments offering palliative care in actual time.

Kerala has over 1,400 palliative care models. According to 2022 knowledge by Pallium India, there have been over 4,000 skilled volunteers throughout ages within the state. The state’s newly fashioned Universal Palliative Care portal is claimed to have registered virtually 8,000 volunteers, in accordance with information experiences in July 2025. 

Fulfilling a necessity

Palliative care isn’t just for the terminally unwell, clarifies Dr. Mathews Numpeli, medical officer for Kerala’s Universal Palliative Care Project. “In Kerala, palliative care is about supporting individuals affected by severe well being points or any persistent ailment — whether or not from most cancers, stroke, liver illness, neuromuscular issues, psychological diseases or childhood diseases. It is about offering any type of assist — medical, nursing or psychosocial — that sufferers and their households want. And within the final 5-10 years, we’ve been conducting weeks-long coaching programmes in faculties and faculties. Training younger individuals provides them the chance to contribute meaningfully to this care,” says Dr. Numpeli.

An estimated 5.4 million individuals in India want palliative care every year. According to a brand new examine by Delhi non-profit Sankala Foundation, in 10 years, one in 4 individuals in Kerala might be over 60. Age-friendly care-planning is now not optionally available.

Kerala’s distinctive neighborhood motion in palliative care started in 1993, when Dr. Rajagopal and Dr. Suresh Kumar of the Institute of Palliative Medicine (IPM) in Kozhikode launched a ache reduction clinic for terminally-ill most cancers sufferers. Over time, via the community-owned, volunteer-driven Neighbourhood Network in Palliative Care mannequin, this effort has expanded throughout the state, aided by its 2008 palliative care coverage which mandated that native our bodies arrange palliative care companies. Supported by docs and nurses, the volunteers — together with college students — have aimed to enhance high quality of life for the ailing and their caregivers.

The up to date state palliative care coverage of 2019 proposed specialised coaching for college kids in faculties and faculties. They are additionally uncovered to the initiative via youth platforms similar to Students in Palliative Care (SIPC) that assist in mobilising massive numbers of individuals for consciousness programmes, fundraising, and direct affected person care assist. Training and WHO-aligned certifications usually make volunteering a peer-led, structured exercise for college students and lots of have grown up seeing communities round them doing it.

How Ashla Rani acquired her title again

Pallium India trustee Ashla Rani’s life modified perpetually after a prepare accident. Four years out and in of hospitals and a number of surgical procedures had diminished her identification to her medical situation. “I used to be simply ‘that case of spinal twine damage’. That was my identification.” Everything shifted when she grew to become a recipient of palliative care. “Suddenly individuals had been calling me Ashla,” she recollects.

For the primary time, Ashla, now 43, and her mom, Janaki Krishnan, who was her major caregiver, felt seen as people. Her mom was now not only a bystander however acknowledged for her position as a caregiver, and her challenges in caring for somebody 24×7.

Ashla has been the recipient of palliative care from individuals throughout generations, together with younger individuals. From a volunteer scouting for wheelchair accessible film halls throughout Thiruvananthapuram in order that Ashla might watch a film within the theatre after a decade, to her every day actions similar to bathing, she has obtained bodily and emotional assist.

She believes the youth herald a distinct type of vitality after they volunteer for palliative care. It’s about entrusting them with the chance and duty, she says. For each the recipient and caregiver, it is a crucial alternate. “It adjustments their perspective in the direction of life as a complete,” says Ashla.

While volunteering for palliative care does occur in different states, and a few like Karnataka and Maharashtra have a palliative care coverage, scholar involvement is sporadic and never structured or ongoing as it’s in lots of components of Kerala. Schools and faculties in Kerala have been working with palliative care non-profits via NSS (National Service Scheme) and NCC (National Cadet Corps) models. This is how the seeds for the state’s distinctive tradition of younger individuals volunteering for palliative care have been sown. “It may very well be a mixture of literacy, college enrolment, an ageing society, and the truth that the neighborhood motion began right here,” says Dr. Rajagopal.

A social strategy

What additionally works is that in Kerala, palliative care didn’t emerge as a purely medical concern. “It was seen as a social concern with medical wants,” says Dr. Hari Mohan, veteran oncologist and palliative care practitioner. Scouts and guides, and different schoolchildren usually go to his clinic. “Awareness is large even at the highschool degree,” he says. 

What this initiative does is train compassion early in a extremely individualistic world. As one volunteer places it, the tradition of care is an enormous a part of individuals’s lifestyle in Kerala due to sturdy local people involvement. For occasion, in lots of locations throughout the state, households cook dinner and provide meals as pothichoru (meals parcels) to 1000’s of sufferers and bystanders in authorities hospitals by way of a community of voluntary organisations.

“There’s a really lively palliative care tradition in North Malabar the place I come from,” says Benna Fathima, 25, a analysis scholar at Ashoka University in Sonipat. She started as a young person, tagging alongside together with her mom, a panchayat member, and her brother who was already a volunteer. “We clear houses, assist with every day duties, or simply spend time with sufferers. Care isn’t simply biomedical right here, it’s deeply social,” she says.

This social facet of care is on full show at Curios, IPM’s annual carnival that pulls over 20,000 guests. Meant to boost consciousness and funds for palliative care, it seems like a school pageant — with calligraphy workshops, music, meals stalls and vibrant streamers throughout its verdant inexperienced campus. Volunteers take sufferers round in wheelchairs to mingle with the group and there’s a lot camaraderie and laughter.

“Youth involvement has been a cornerstone of our strategy,” says Saif Mohammed, marketing consultant and college member at IPM. Since 2010, its SIPC programme has introduced collectively over 10,000 volunteers by way of consciousness periods in faculties. Members agree that the youth herald new vitality and completely different concepts. “Those genuinely get skilled, and select tips on how to get entangled — in affected person care, neighborhood consciousness or fundraising. And what college students do with the coaching usually goes past what we might plan or think about,” says Mohammed.

How to coach the younger

> Pallium India companions with 14 panchayat-level organisations in Thiruvananthapuram to run periods for Classes IX and XI.

> At IPM, volunteers are undergraduates between the ages of 17 and 21. Direct care volunteers full a 20-hour WHO-aligned caregiver programme, with a six-month psychosocial assist possibility for weekly visits.

> Pain and Palliative Care Society, Thrissur, additionally affords sensitisation programmes to scholar volunteers.

> Farook College in Kozhikode runs a ache and palliative care clinic and a dialysis centre that’s managed and aided by academics and college students.

Nihala Kathoon is a type of college students. The Kozhikode resident began by organising actions, steadily shifting on to working with sufferers, a observe many college students take. One reminiscence stays vivid in her thoughts. “There was an 18-year-old lady admitted right here with most cancers. During Curios 2023, we carried out Oppana, a conventional Muslim dance from this area, the place one performer performs the bride. This lady insisted on being the bride and was thrilled to get that chance, usually checking herself within the mirror, taking photographs.” 

The expertise continues to be cherished by those that knew her, for by the point the 2024 occasion got here alongside, the lady was in a severely weak state. She handed away quickly after. “It was very emotional for me although we’re skilled to deal with such moments,” recollects Kathoon. “The consolation was in realizing that we had made her completely satisfied in her final months.”

Antidote to loneliness

If feelings are powerful to deal with for some younger volunteers, compassion too doesn’t come straightforward. At 14, Fathima froze on the sight of a catheter throughout an preliminary palliative care go to. And in her confusion, she gulped down the coconut water meant for the affected person. “I felt terribly responsible. I used to be alleged to make the state of affairs higher, however made him really feel worse with my response.” She eased again into caregiving via the therapeutic energy of phrases. “I began writing letters to sufferers. That helped me really feel I nonetheless had one thing significant to supply,”

Training and counselling assist construct empathy and train small however very important particulars. “We had been instructed to not drink juice in entrance of diabetic sufferers even when their household insisted, as a result of they could not have had juice in years,” Fathima says. She additionally learnt to note little particulars similar to if households might afford medication or had anyone to assist round.

Beyond college, palliative care volunteering is commonly via phrase of mouth and cuts throughout the socio-economic divide. Students supply assist as and when required; affected person wants are assessed by the organisation they’re volunteering with, the native nurse or village panchayat. It might differ from as soon as per week to a couple occasions a month. Usually, one affected person is visited by two volunteers.

The college students’ youthful vitality will be an antidote to the loneliness of aged sufferers. Kerala’s lengthy migration historical past means a lot of its working inhabitants is employed exterior India, leading to numerous elders residing alone. “In 2015, over 1.7 lakh senior residents in Kerala lived in single-member households. Many stay in full isolation,” says Dr. Rajagopal. 

Given this background, requests for care can are available in many varieties. Once an aged man requested Fathima to {photograph} him along with his spouse so they might have a laminated portrait. “Sadly, he handed away earlier than I might give it to him,” she says.

The emotional weight of the work is actual, however so is its impression on each sufferers and volunteers. Kathoon remembers chopping the thickened toenails of a paraplegic girl she was visiting. “It wasn’t an enormous factor for me, only a human act. But to her, it was large. It meant consolation and dignity.” One day, when Kathoon was working late for her go to, she obtained a frightened telephone name. “‘Aren’t you coming right now,’ the lady requested me. That’s once we realised how a lot our visits meant to her,” she says. 

Kathoon had cared for her grandmother earlier however volunteering taught her the significance of dignity. “These sufferers as soon as lived lively lives too,” she says. Palliative care, she believes, is about ensuring somebody feels seen and valued. 

Spinal warriors in Puducherry

In Puducherry, Sanjeevan Palliative Care of Sri Aurobindo Society helps over 2,250 sufferers throughout 145 villages, and provides college students the chance to seek out empathy and duty inside themselves by visiting them. Dr. Mohan Raja S., medical officer at Sanjeevan, says, “Schoolchildren from Classes II to X usually go to sufferers throughout villages to supply psycho-social assist. They assist them comb their hair or spend time with them.” Nursing college students too volunteer. Given the various circumstances of spinal damage within the area as a consequence of highway accidents, a WhatsApp-based assist group known as Spinal Warriors brings collectively scholar volunteers and spinal damage survivors to offer assist when wanted.

Ayana Kunju, 21, works with IPM, becoming a member of docs and nurses on their rounds, aiding with medicines, and offering psychosocial assist. She first joined as a volunteer whereas in faculty. Caring for sufferers appears to be her calling and it has helped outline her chosen profession of a social employee. “When I costume wounds or do small procedures, I really feel very completely satisfied as a result of I’m serving to so many individuals. The happiness on their faces means loads,” she says.

In the nuclear household period, such experiences can bridge generational gaps. “Today, many kids lack emotional anchors,” observes Dr. Rajagopal. “Compassion and reference to elders assist develop emotional intelligence.” He believes younger individuals usually have extra sincerity on the job than adults whose commitments are divided as a consequence of diversified obligations. 

Building connections

However, not everybody can take care of an environment of ailment and demise. Kunju and Kathoon each say dropping somebody will be deeply emotional. Their coaching usually focuses on this side and there’s fixed assist. “It helps to listen to concerning the experiences of our seniors and others round,” says Kunju.

The proven fact that volunteers have the liberty to decide on how they want to assist makes a distinction. B. (title withheld), an engineering scholar in Kochi, says he prefers to be concerned with oblique affected person care (fundraising and occasion administration actions) and that volunteering has made him extra caring in the direction of his ageing grandparents at dwelling. 

There can be the chance of “hyper-volunteering”. Dr. Mohan recollects a time when a volunteer wrongly suggested a most cancers affected person to skip remedy. “These misjudgements occur as a result of volunteers aren’t skilled to diagnose or deal with, but some start to think about themselves as consultants.” He believes the reply lies in structured coaching and setting clear boundaries.

Despite the issues and shortcomings, younger individuals coming collectively to carry compassionate care to the ailing and dying is a singular phenomenon. As Mohammed notes: “It cultivates compassion — one thing that can not be learnt from textbooks, however solely via actual, human connection.” It’s one thing the early architects of palliative care in Kerala recognised and drove dwelling. “Doctors and nurses will at all times have an essential position, however the driving power has to come back from the individuals,” provides Mohammed.

In right now’s conflict-ridden world and occasions of social apathy, being form and thoughtful can typically be thought of as weaknesses. From that viewpoint, younger individuals lending their time to caring for the ailing, deserted and dying will be seen as a delicate but fixed pushback towards a society that usually deserts the weak and weak. “Volunteering in palliative care has taught me to belief within the politics of affection and care. It provides me hope,” says Fathima.

The author is a contract journalist and the co-author of Rethink Ageing.