There’s a feeling of ambient purpose and cheerful energy as you walk down the corridors of the Institute of Palliative Medicine, Kozhikode. Nestled in a leafy campus near the chest hospital, the place is bustling with people who have come to lend a hand, or learn how to, at the training classes held regularly at the Institute.
Prakash Mathew, 44, a designer, has for the past four years spent much of his free time helping out at the Institute and at similar initiatives such as Compassionate Kozhikode, training volunteers.
It’s the interactions with patients and their families that inspire him to keep going — how he can bring a little happiness to their lives; how his words can be of some comfort.
Each day, at least 500 volunteers like Mathew, most of them students from more than 70 colleges in Kozhikode district, are available to help care for the patients, in addition to some 38 staff members, including doctors and nurses.
In January, many of them also pitched in to hold a three-day fundraising carnival that featured art, literature, music and food, with handicrafts and dishes made by patients. It was quite a success, with some 30,000 people attending, says P.C. Sreekumar, a volunteer himself, and vice-chairman of the Pain and Palliative Care Society (PPCS), which runs the Institute.
The volunteers’ work isn’t limited to the Institute; most patients are based at home, and visits — some being night-time home visits as part of emergency services co-ordinated by the city administration — are a major part of the job, made possible by hundreds of volunteer drivers. Some volunteers have personal stories of caring for a friend or relative which motivated them to sign up, but others simply work because they see it as a community initiative.
Volunteers in Beypore take patients to the beach.
Inspiring progress
PPCS is an inspiring example of what civil society can do, and it’s far from unique in Kerala, which now has 1,550 palliative care units, 450 of which are run by community-based organisations and NGOs. But Kozhikode is where it all started in 1993, when doctors at the Government Medical College led by M.R. Rajagopal and Suresh Kumar — now Director, WHO Collaborating Centre for Communitry Participation in Palliative care and Long Term Care — founded PPCS.
Starting out with a focus on cancer — and just ₹1,500 as capital funds — it was recognised by the World Health Organization in 1995 and has expanded its remit over time. But the real turning point, says Dr. Kumar — who was recently in Arunachal Pradesh and Puducherry to help set up similar initiatives and train volunteers — came in 1999-2000 when they started Neighbourhood Networks in Palliative Care, an approach that emphasised local, community-based care rather than an institutional, hospital-based approach led by doctors.
Over the years, they have trained tens of thousands of volunteers, a number of whom went on to start independent palliative care organisations in their own communities. Their efforts have even extended abroad, working with groups in countries such as Sri Lanka, Bangladesh and Thailand, with plans to initiate work in Myanmar as well.
The Government of Kerala has been integrating palliative care with healthcare policy at all levels in a three-tier system. A 2008 policy, updated last year, specifies neighbourhood networks — co-ordinated with NGOs — with trained staff who can identify patients’ needs and provide home care at the primary (panchayat/ municipality/ corporation) level.
A home visit in Kochi
The next two tiers are community health centres providing in-patient care, taluk hospitals with staff trained to deal with emergencies; then a division of palliative medicine at all medical colleges and general and district hospitals.
Way forward
Since 2017, palliative medicine, once an obscure discipline, has been part of the M.B.B.S. curriculum; it has also been offered as an M.D. programme at institutions elsewhere in the country, including AIIMS-Delhi and the Gujarat Cancer Research Institute.
On the other hand, it remains an unglamorous path for doctors and a far-from-lucrative prospect for businesses, with the result that there are only a few small units at private hospitals. While Kerala and, in recent years, other southern States, have made much advance, much remains to be done elsewhere in the country. Just 2% of people who need palliative care in India have access to it, far below the global average of 14%. The figure for Kerala stands above 26%.
What has Kerala done right? Dr. Kumar says, “There’s a difference in the models. In Kerala, there’s so much involvement from the public, from civil society. In States like Tamil Nadu and Telangana, they have services based at a cancer centre or hospital, just as we did when we started out, but there are limitations to that model — not just in terms of numbers, but also quality of care and social support. You can’t keep patients in hospital forever. You can’t treat terminal illnesses or dying stages as an exclusively medical issue. The community-based model, with institutions playing a supporting role, that we are promoting is the only way forward.”
Published - March 14, 2020 04:05 pm IST
