Johanna Deeksha has an excellent story in Scroll.in that chronicles Kerala’s success with palliative care (caring for those living with serious or terminal illnesses like cancer, cardiovascular and chronic respiratory diseases, kidney failure, paralysis, dementia etc.).
The state leads by a large margin when it comes to providing such care to its citizens – while in India, just about 2% of the patient population has access to palliative care, in Kerala, almost 60% of the patient population has access to palliative care… Kerala provides this care through a network of almost 1,700 palliative care centres across its 14 districts, said Kumar. While some of these centres have in-patient services, most provide home-care services – that is, they serve as a hub comprising some medical professionals and volunteers from the area, who visit homes of residents in the region to treat them. Of these, 1,100 are government centres, and between 400 and 450 are run by NGOs. Between 80 and 90 are run by political parties, which Kumar explained is a phenomenon only seen in Kerala. Kozhikode has the largest number of palliative care centres, and is where the state’s model of palliative care has its roots.
It’s interesting that the palliative care success of the state can be traced back to the efforts of a couple of individuals who worked tirelessly to create awareness and mainstream the issue.
As a young medical student in Kozhikode, Dr Rajagopal MR heard screams from his next-door neighbour, who was afflicted with a terminal illness and suffered from intense pain. Rajagopal recounted that this experience led him to start thinking about the importance of pain management… In order to give focused attention to the problem, in 1993, he and his former student Dr Suresh Kumar established the Pain and Palliative Care Society, in Kozhikode – Rajagopal served as its chairman and Kumar as its secretary. Rajagopal recounted that he was deeply influenced by a lecture he attended around this time, by Gilly Burn, a British nurse who was travelling around India and introducing the medical fraternity to the idea of palliative care. He also attended a training programme of about 10 weeks in the United Kingdom, after which he returned to dedicate himself to the society’s work… Initially, the society functioned out of a 12-foot-by-12-foot room with a verandah, at the Government Medical College, where patients could consult doctors on palliative care and pain management. While the society offered home care services from its inception, it was only in 1995 that a formal home care team was established. Also in 1993, Rajagopal established Pallium India, which had broader aims, including of spreading awareness and training about palliative care.
The palliative care system in Kerala is firmly grounded in the community.
Patients spent the greatest amount of time with their family, neighbours and community. “The only way to provide proper care would be to train people in the community to intervene and become caregivers,” Suresh Kumar said. “It seemed like such a simple idea but took us so long to figure that out.” To address this problem, in 1998, Rajagopal and Kumar, with support from several NGOs, set up a community-based and volunteer-driven palliative care programme in Kerala, known as the Neighbourhood Network for Palliative Care, centred on the idea that palliative care is not merely a medical problem, but also a societal one. “That is why only in Kerala, the palliative care programme is the responsibility of the local government bodies – panchayats, municipalities and corporations,” Kumar said. The project was the first of its kind in India, and its approach came to be known as the “Kerala model”.
Five years later, in 2003, Rajagopal and Kumar set up the Institute of Palliative Medicine, adjacent to the medical college – the institute was to serve as a centre for treatment, training, research and outreach. The institute is now a partner to the World Health Organisation, in which role it supports the WHO in carrying out activities related to palliative care in India. The state’s community-centred system of palliative care received a fillip after the government made it the basis of its Palliative Care Policy, released in 2008. The policy stated that palliative care was an integral part of healthcare, and that not just the state health department, but even local government bodies should participate in setting up palliative care services. Kerala was the first state to have such a policy – Maharashtra followed in 2012, and Karnataka in 2016. By 2013, every panchayat in Kerala had a care centre unit. Most of these centres are home care centres, providing doctors, nurses and caregivers at home to families in need. Today, all district and taluk hospitals have palliative care centres where patients can receive treatment – but, Kumar explained, home care centres are more efficacious since most patients, especially those with terminal diseases, and those who are bedridden or otherwise have limited mobility, cannot travel back and forth to treatment centres.
The article has several stories of active involvement by the local community and public-spirited individuals in the sustenance of the state’s palliative care system.
In many instances, individuals who need palliative care do not have caregivers who can take them to a hospital or provide care at home. In such situations, the local government body ensures that a neighbour or some member of the locality that the patient lives in is given the training needed to become a caregiver. “Do neighbours really volunteer to take care of someone who isn’t related to them?” I asked Nambath, “Why? How would it benefit them?” He responded, “In Kerala, we are a very close-knit society. There is no floating population. People often live in the same area for decades and they all already know each other. So, they step up to help each other.”
At the Community Palliative Care Centre’s office in Malaparamba, volunteers said that they were rarely short of funds. “We always have enough,” Nambath said. “People are always contributing.” He added, “When we told people in the locality that we needed another vehicle so we could visit more houses, immediately the funds poured in, and someone would always enquire if we bought the vehicle and if it had made our jobs easier for us.”
The emergence of palliative care in Kerala provides several learnings for other areas of social development.
For a start, human engagement interventions must be grounded in the community and develop local ownership and accountability if they are to succeed. This applies to improving student learning outcomes, mental health improvements, sanitation and hygiene, sensitivity to children with special needs, welfare of disabled people etc., just as much or more as it applies to palliative care.
Second, the service delivery system has to collectively embrace an account of its mission, one that goes beyond being a mere job responsibility. There must be a civic-spirited and moral imperative associated with this account. This is critical and difficult to achieve from a top-down government mandate (top-down mandates can only supplement the critical local action).
Third, government engagement and funding must be complemented by volunteerism and local philanthropy, for it is such acts that contribute to ownership and accountability. Public policy must acknowledge the importance of such actions and must proactively create (and encourage its creation) the space for them.
Fourth, the internalisation of an account generally emerges through long-drawn social mobilisation, which in turn comes from a gradual collective realisation of the issue as a problem or felt need. Societies and polities with strong social capital will find it easier to embrace such accounts, whereas those with weak social capital will struggle even with strong top-down promotion. It underlines the need for a strong social fabric in social development.
Fifth, all such efforts to internalise accounts require a combination of social mobilisation and government support. The former without the latter runs into the problems of sustainability and especially scalability. The latter without the former is unlikely to get internalised and will, at best, meander.
Sixth, both social mobilisation and top-down engagement require passionate champions to nurture and grow the movement for several years. The top-down bureaucratic change is not likely to come from the typical politician or bureaucrat but from passionate insiders with a strong personal stake in the cause. The system (both in the society and the bureaucracy) must provide the space and openings for the emergence of such champions and encourage them. They are worth their weight in gold.
Finally, this example highlights a couple of very important high-level points on engaging with such issues. One, there are binding limitations to the effective adoption of externally grafted public policy ideas (and interventions) that lack serious local ownership. The latter is an essential requirement. Two, it’s perhaps wrong to engage with such issues with the framework and objective of their scalability, especially in their early stages. There’s something about the imperatives, techniques, and methods of scalability that conflicts with that of internalisation and adoption.
Ironically, such ideas and interventions are more likely to scale when we think less of scale and focus on building community ownership and accountability. Long-drawn actions gradually gather enough moss to tip over and scale. As Lenin said, for years and decades nothing happens, and then in days years and decades happen!
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