Palliative Care Manjeri

Religion has re-emerged as a significant force in the political and socio-cultural spheres, with growing interest in its intersections with development. This chapter examines the Islamic activism within the palliative care movement in Malappuram, a Muslim-majority district of Kerala, India, against the backdrop of the state's unique developmental model. The institutionalized delivery of palliative care in Kerala, supported by local communities and both religious and non-religious civil society organizations, has evolved into a mass movement. The study highlights the transformative role of Muslim organizations in this initiative, which represents a shift in their social engagement dynamics. The chapter situates this activism within the broader framework of religious civil society, exploring its interaction with the state amidst neoliberal reforms and decentralization efforts. Kerala's distinctive political and developmental context, including its secular public domain and mult...

Palliative care is a comprehensive approach aimed at enhancing the quality of life for patients and their families dealing with life-threatening illnesses. By addressing physical, psychosocial, and spiritual needs, palliative care seeks to alleviate suffering and maintain dignity during challenging times. This research aimed to evaluate the awareness and attitudes toward palliative care among residents of urban and rural areas in the Ernakulam district, Kerala, India. A cross-sectional study was conducted involving 350 households, comprising 185 from urban areas and 165 from rural areas. The senior-most member of each household was interviewed using a pre-designed questionnaire, focusing on their awareness, sources of information, and attitudes toward palliative care. The study findings revealed a significant disparity in awareness levels between urban and rural participants. While 13.4% of the total respondents had heard about palliative care, awareness was considerably higher in urb...

The study explores the caregiver burden and quality of life (QoL) among caregivers of palliative care patients in Kerala, India, with a particular focus on aging caregivers. Kerala’s decentralized health governance system, which has been operating for almost three decades, has pioneered a community-driven approach to palliative care. This program heavily depends on family caregivers , who face numerous challenges, including physical, psychological, social, and financial burdens. Despite these challenges, caregiver issues remain under-addressed in the program’s design and implementation. A mixed-methods approach was adopted, combining a cross-sectional survey of 221 caregivers and in-depth interviews with caregivers and palliative care nurses. The survey utilized tools such as the Achutha Menon Centre Caregiver Burden Inventory and EuroQol EQ-5D-5L to measure caregiver burden and QoL. Qualitative data were obtained through interviews with caregivers and nurses, exploring their perc...

The growing need for palliative care globally is especially critical in resource-poor settings, where patients with advanced cancer, AIDS, and other chronic conditions often lack access to treatment. In Kerala, India, the Pain and Palliative Care Society (PPCS) developed a pioneering model for community-based palliative care. Beginning as a small outpatient service in Calicut in 1993, PPCS has expanded into a network of 33 clinics offering free care to patients with terminal illnesses. This model emphasizes community participation, family empowerment, and the use of local resources. Trained volunteers support patients through home care and outpatient services, ensuring holistic care that addresses physical, emotional, and social needs. By 2002, this network was treating approximately 6,000 new patients annually, covering about 25% of the need among newly diagnosed cancer patients. A notable success of this initiative is the " Network Neighborhood for Palliative Care " estab...

The Kerala model of community-based palliative care is often celebrated as a sustainable and inclusive approach to providing holistic healthcare to individuals with life-limiting illnesses. This study explores the sustainability of the Kerala model by examining ten selected palliative care units across the Malappuram and Palakkad districts, focusing on three key dimensions of sustainability: patient care, economic self-sufficiency, and voluntary support. The research highlights how the model ensures uninterrupted, cost-free, and comprehensive care, encompassing physical, psychological, spiritual, and economic support for patients and their families. In Malappuram , where palliative care services are particularly robust, there are approximately 112 palliative care units operated by local self-governments, complemented by an additional 90 community-led or NGO-run units. This extensive network demonstrates Malappuram’s critical role in implementing and sustaining community-based care. T...

This paper examines the conflicts and unintended consequences arising from diverse social conventions within transformative service systems. Using convention theory and a 10-year ethnographic study of a community-based palliative care initiative in Kerala, India , the authors propose a dialectical transformative service system framework . This framework synthesizes the calculative, conflict-ridden regime of justice and the noncalculative, altruistic regime of agape . The regime of justice is built on civic conventions at its core and supported by industrial, inspired, market, domestic, and fame conventions, whereas the regime of agape promotes selfless love and solidarity, transcending transactional relationships. The study enriches transformative service research by providing a micro-level understanding of disputes, their reconciliation, and the role of morality in service delivery, particularly within health and caregiving. The study focuses on the community palliative care mod...

The district of Malappuram holds a significant place in the community-based palliative care movement in Kerala. As highlighted in this study, Malappuram, along with Kozhikode, accounts for the largest number of palliative care units in India , and these two districts are recognized as the origin of the palliative care movement in the country. The analysis underscores the pivotal role of Malappuram in advancing a sustainable, community-driven model of health care that extensively leverages social capital. One of the standout features of the palliative care movement in Malappuram is the active involvement of the local community . The study reveals that the success of the palliative care model in this district is significantly influenced by the cohesion and cooperation among the population , particularly the Muslim community, which has played an essential role in supporting and sustaining the movement during its formative years. This strong sense of community solidarity has translated in...

  Palliative care is a relatively new concept in the Indian healthcare landscape , arising from the need to address the challenges posed by changing family structures, increasing life expectancy, and evolving epidemiological trends. In this context, Kerala’s community-based palliative care movement has emerged as a pioneering model that combines decentralized public health delivery with active community participation. This abstract reviews the palliative care policy of Kerala, highlighting its innovative features, socio-economic impact, and broader implications for public health in India. Kerala’s palliative care model is unique due to its emphasis on community-based interventions, economic sustainability, and integration with local self-governments. Initially focused on end-of-life care and pain management, the scope of palliative care has expanded to address the bio-psychosocial and spiritual needs of patients and families . This approach has garnered global recognition, includ...

Palliative care is emerging as a critical discipline in the global health landscape, yet it remains largely underdeveloped in many developing countries. This article highlights the disparity in palliative care services between developed and developing nations, emphasizing the urgent need to prioritize it as a public health issue. With millions of deaths annually attributed to cancer, HIV/AIDS, and other chronic illnesses, most of these occurring in resource-poor countries, the demand for palliative care far exceeds the available services. Inadequate government commitment, limited opioid availability, and insufficient education are identified as the primary barriers impeding the development and delivery of effective palliative care in these regions. The World Health Organization (WHO) defines palliative care as an approach that enhances the quality of life of patients and their families by addressing physical, psychological, and spiritual suffering. However, delivering effective palliat...

The paper "Logic Conflicts in Community-Based Palliative Care" examines the challenges and opportunities within community-based palliative care systems, using Kerala, India, as a case study. Kerala's model, recognized for its emphasis on community ownership, total care, and integration with public health systems, serves as a critical lens to explore organizational conflicts. The study identifies four central "logic conflicts" in the field of palliative care: professional versus community logics, centralized versus decentralized governance, generalist versus specialist care logics, and charity versus rights-based logics. These conflicts arise due to diverse interests and power dynamics among stakeholders, including medical professionals, state agencies, and community volunteers, influencing decision-making and coordination. The study employs an inductive qualitative methodology, drawing from fieldwork conducted across eight palliative care clinics in Kerala, in...

Kerala, India, has made significant strides in palliative care (PC) through its innovative community-driven model, the Neighborhood Network in Palliative Care (NNPC) . This initiative, the world's largest community-owned PC network, comprises over 60 units covering a population exceeding 12 million. It seeks to empower local communities to provide comprehensive care for chronically ill and terminally ill patients, reflecting a groundbreaking model of sustainable, community-based healthcare delivery. The approach leverages the concept of primary healthcare outlined in the WHO's Alma-Ata Declaration, integrating community participation at every level. The NNPC model is rooted in empowering volunteers within local communities through structured training. These volunteers identify the needs of patients and provide support, collaborating with medical professionals to address psychosocial, spiritual, and medical challenges. The network emphasizes home-based care supplemented by outp...

 Kerala, the southern state of India, is celebrated for its achievements in health and education, often cited as a development model by social scientists. However, the state's health system historically prioritized disease prevention and cure, overlooking the emotional and physical relief required by patients beyond the stage of curability. This gap led to the emergence of the palliative care movement, which gained prominence in Kerala, particularly in the Malabar region, setting a precedent for the rest of India. This paper traces the evolution, significance, and impact of the palliative care movement in Kerala’s health system, emphasizing its socio-economic and demographic contexts. Evolution of the Palliative Care Movement Kerala’s palliative care journey began in 1993 with the establishment of the first unit at Kozhikode Medical College, in collaboration with the Institute of Palliative Medicine (IPM). This initiative marked a paradigm shift in the state’s health model by integ...

This study examines the determinants of sustainability in community-based palliative care operations, emphasizing the successful Kerala model, particularly in Malappuram district. Kerala's palliative care approach is internationally acclaimed for its holistic and community-driven methodology. Through qualitative research and interviews with 12 professional social workers, five key themes emerged as critical factors for sustainable palliative care: holistic care, community participation, volunteerism, resource mobilization, and the socio-political environment. Malappuram, in northern Kerala, exemplifies the effectiveness of this model, which integrates medical, psychological, social, and economic support tailored to patient and family needs. The district’s extensive community participation fosters a unique environment where local volunteers play a pivotal role in identifying needs, mobilizing resources, and delivering services. These volunteers, often trained, bring familiarity an...

The article examines the integration of social work methods within community palliative care, focusing on the Kerala model as an innovative and holistic approach. It explores how social work principles, tools, and techniques are applied collaboratively across six core methods—casework, group work, community organization, social welfare administration, social work research, and social action. The Kerala model leverages community participation, voluntarism, and resource mobilization to provide sustainable care for patients and their families, addressing physical, psychological, and social needs. By blending professional social work practices with community-based palliative care, the model enhances holistic patient care and serves as a replicable framework for similar contexts globally. Read More

This exploratory study protocol aims to evaluate the impact of a capacity-building program for primary health care workers (PHCWs) in improving symptom assessment and management for cancer patients in community settings. It focuses on training Accredited Social Health Activists (ASHAs), auxiliary nurse midwives (ANMs), and staff nurses in palliative care principles, symptom management, and patient support using a combination of workshops and a mobile application. The intervention includes pre- and post-training assessments of knowledge, attitudes, and skills. Conducted in Udupi District, India, the study intends to empower grassroots health workers, enhance palliative care accessibility, and address gaps in community-level care. Expected outcomes include improved identification and management of palliative care needs, and insights into facilitators and barriers to care delivery, providing a framework for integrating palliative care into primary healthcare systems. Read More

This study investigates the factors influencing the choice between the Kerala Model of Palliative Care (KMPC) and Standard Care (SC) among Indian cancer patients. Using a cross-sectional design and purposive sampling, 87 patients (SC = 40, KMPC = 47) from Kerala completed questionnaires assessing pain, anxiety, depression, and quality of life (QoL). Results revealed that KMPC patients typically had lower educational levels, were self-employed or homemakers, belonged to middle or lower socioeconomic statuses, and relied on government or self-funding. KMPC patients reported higher pain levels but lower anxiety and depression and better QoL across physical, social, functional, and emotional domains compared to SC patients. The findings emphasize the need for enhanced pain management within KMPC and broader community awareness about its benefits. These insights could guide interventions to reduce stigma and support informed patient decisions regarding palliative care preferences. Read More

  This study explores the dynamics of subaltern solidarity-making in the institutionalization of a community-driven palliative care model in Kerala, India. Focusing on the collaborative efforts between diverse actors, including subaltern and dominant groups, the research investigates the creation of the Neighborhood Network in Palliative Care (NNPC). Central to this narrative is Dr. Abdul Rahman, a physician in Manjeri, Malappuram district, who played a pivotal role in establishing satellite centers for palliative care. Beginning with weekly consultations by the Kozhikode team, these efforts culminated in the development of an integrated, decentralized care model. The Manjeri initiative exemplified mutual recognition and collective action, reconfiguring spatial relations to embed care within communities. By 2008, these grassroots efforts influenced the Kerala government to introduce Asia’s first palliative care policy, highlighting the transformative potential of solidarity across ...

The history of palliative care in Kerala is marked by the transformative efforts in Manjeri, Malappuram district. As part of the globally recognized Neighbourhood Network in Palliative Care (NNPC), initiatives in Manjeri have played a vital role in establishing a community-based model that integrates healthcare, volunteerism, and social support. This model aligns with the World Health Organization’s public health strategy by ensuring cost-effective, holistic care accessible to all, particularly in resource-limited settings. Programs in Manjeri have successfully addressed the medical, psychosocial, and spiritual needs of patients with chronic illnesses, leveraging community ownership and engagement to sustain care delivery. The collective efforts in Malappuram highlight the power of local networks in achieving equitable healthcare, offering a replicable blueprint for addressing the growing global need for palliative care. This study underscores the importance of community-driven approac...

The Manjeri Pain and Palliative Care Unit in Malappuram, Kerala, stands as a pioneering model in community-based palliative care. Established in 1997, it has grown into a robust program offering holistic, home-based care to patients with chronic and terminal illnesses. This qualitative study highlights the interdependent roles of doctors, nurses, and volunteers in delivering care, emphasizing the program's foundation on community involvement and volunteerism. The program addresses not only medical needs but also psychosocial, financial, and emotional challenges faced by patients and their caregivers. With over 500 patients currently enrolled, the unit demonstrates the efficacy of localized healthcare networks supported by neighborhood participation. Despite challenges such as resource constraints and societal misconceptions about palliative care, the Manjeri initiative underscores the transformative impact of empowering local communities to sustain healthcare programs. This model s...

The evolution of community-based palliative care in Kerala showcases a unique model of healthcare rooted in local participation and ownership. Manjeri in Malappuram district emerges as a significant site in this transformative journey, reflecting a pioneering spirit of community involvement. The establishment of volunteer-driven initiatives and the formation of networks such as the Neighborhood Network in Palliative Care (NNPC) are hallmarks of this model, addressing the needs of patients with chronic and terminal illnesses. Malappuram’s integration of local governments, civil society, and grassroots organizations demonstrates a scalable and sustainable approach to healthcare delivery. By blending compassion with innovation, the region has set a global benchmark in addressing healthcare inequities and enhancing quality of life for vulnerable populations. This paper delves into the challenges and successes of Kerala’s model, with particular emphasis on the contributions of Malappuram an...

The evolution of community-based palliative care in Kerala, India, finds its roots in grassroots initiatives and innovative models of care. Manjeri in Malappuram district emerges as a key site for the pioneering Neighbourhood Network in Palliative Care (NNPC), a movement that emphasizes the role of trained volunteers in delivering holistic care to patients with chronic and terminal illnesses. Workshops and community participation in Manjeri have inspired a transformative approach to palliative care, balancing accessibility and quality in resource-limited settings. The emphasis on community ownership and decentralization, as seen in the activities in Manjeri, underscores the scalability and sustainability of the Kerala model. This study highlights how localized efforts in districts like Malappuram have set global benchmarks for addressing healthcare inequities and improving the quality of life for vulnerable populations. Read More