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Abstract

The higher prevalence and incidents of chronic and life-threatening illnesses and the aging population living with morbidity and life-limiting conditions necessitate the need for care provisions like palliative care globally. Palliative care strives for the quality of life of patients with terminal illnesses and serious health conditions and their families. However, globally, access to palliative care remains very limited. The situation is similar in India, except for Kerala, where palliative care access to the needy population is almost universal. Kerala’s community palliative care model is globally acclaimed for its operation, which includes community participation and sustainability. The palliative care policy of Kerala, which was the first one in Asia, was a significant milestone in the palliative care movement of Kerala, as it mandated the interventions from government measures and further strengthened the community-managed palliative care interventions. The palliative care efforts in Kerala have significantly influenced the health scenario. However, discussion on the role of palliative care in achieving sustainable development goals (SDGs) is minimal. In this context, this article explores the policy and practices of palliative care in Kerala and its contribution to SDG-3, health and well-being. We have surrounded the discussion on the context of palliative care interventions and Sustainable Development Goal 3 through the unique features of the Kerala model of palliative care and its contribution to the healthcare scenario of the state. Through available literature and from the researchers’ first-hand experience, this article explores the reciprocity of palliative care interventions, policy, healthcare programs, and SDG-3. Documenting the potential of Kerala’s community-based palliative care for SDG-3 has implications for replications of this model in similar contexts.

Keywords

palliative care sustainable development goals Kerala model of palliative care health and well-being chronic illness

Introduction

An epidemiological transition is evident globally, characterized by increased life expectancy and an aging population. Chronic and noncommunicable diseases surpass infectious or communicable diseases in terms of disease burden and death.¹ The increased proportion of the aging population has resulted in a scenario where people live longer but with frailty and multiple chronic conditions.² It is crucial to note that the population of people aged 60 years and above is expected to double, and people aged 80 years and above are expected to triple between 2015 and 2050.³ With a tremendous increase in noncommunicable diseases such as cancer, dementia, and cardiovascular or lung diseases, people in lower- and middle-income countries are facing serious health-related suffering.⁴ Austerity measures worsen the public health scenario of many countries and adversely affect lower-middle-income countries and vulnerable populations.^5,6 Moreover, prevailing social determinants also play a critical role in the health-related inequalities and disparities among people across countries.^7,8 Though the advancements in the healthcare system have prolonged the lives of people by providing medical support and advanced treatment options, the pain and related suffering of people with chronic or life-threatening illnesses remain a challenge.⁹

The increased need for care in people suffering from chronic or terminal illnesses has created a dependency on family caregivers for their daily activities of living, medication management, dietary adherence, and other household tasks across countries.¹⁰ These demanding caregiving duties have resulted in the physical, social, and mental tolls on the family caregivers.¹¹ In addition, the healthcare expenditures, including treatment, medication, hospitalization charges, and transportation, are majorly met out of pocket by the family members.¹² The healthcare expenditure concerning chronic or terminal illnesses requiring long-term care also has added to the financial burden of the families.¹³

Palliative care plays a crucial role in the context of epidemiological shifts marked by population aging, higher prevalence of chronic illness, and increased need for long-term and terminal care.¹⁴ Palliative care is a multidisciplinary and comprehensive approach aimed at reducing pain and managing symptoms of patients suffering from terminal or chronic illnesses.¹⁵ Palliative care is a holistic approach to care as it addresses the patients’ and their families’ physical, social, emotional, and spiritual needs.¹⁶ Palliative care aims to improve the quality of life and ensure a person’s dignity until death through a multidisciplinary team of doctors, nurses, social workers, and other community volunteers who provide continued and prolonged care throughout the illness.¹⁵

Palliative care can be vital in achieving sustainable development goals (SDG). SDGs are 17 global goals that aim for comprehensive development in various domains, including promoting healthy lives and well-being for all ages.¹⁷ These global goals, especially SDG-3, focus on equitable access to health services, reducing suffering, and improving the quality of life of individuals, and they closely align with palliative care practices.¹⁸ Through its multisectoral approach, palliative care reduces healthcare access inequalities and promotes holistic care that contributes to individuals’ well-being and, consequently, to sustainable development.¹⁹ This article explores the role of palliative care in achieving SDG-3, health, and well-being in the context of palliative care policy and practice in Kerala, India. The palliative care movement in Kerala is globally renowned for its community-based approach and sustainability. Analyzing its specific context has implications for the SDGs, which will be insightful for policymakers, practitioners, and educators in exploring the potential of replicating and learning from this model.

Palliative care and SDGs

Palliative care has emerged as a human right that focuses on the management of patients’ physical illnesses, relieving their suffering, and addressing psychological, social, and spiritual needs.¹⁴ The major focus areas of palliative care, such as early identification, correct assessment, and treatment for pain and other symptoms, make it a unique and holistic approach to health care.²⁰ Saunders, the pioneer in the hospice movement, has proposed the concept of total pain, including physical, social, psychological, and spiritual domains.²¹ She suggested that palliative care addresses these pains in all possible manner by providing necessary services to the patients and their families. Conventional healthcare practices with a major focus on disease management and cure have limitations in supporting the patients and families seeking long-term care along with pain and symptom management, creating a gap and a crucial need for palliative care.²²

Although palliative care focuses on improving the quality of life of patients and their families, access to it remains very limited. Globally, only 14% of people needing palliative care have access to it.²³ Out of the 20 million people requiring palliative care worldwide, 60% are older adults above the age of 60 years.²⁴ It is also crucial to note that even though palliative care services are widespread across the globe, their presence is very uneven in developing and resource-poor settings. Around 80% of the deaths due to chronic illnesses happen in low- and middle-income countries, which account for the majority of the world’s population count.²⁵ The situation is more critical in India, being the most populated country in the world with a substantially higher number of people suffering from multiple health conditions requiring continuous care.²⁶ Moreover, with the rapidly increasing aging population, people face a considerable burden of pain and suffering due to life-limiting and chronic illnesses.²⁷ The limited access to care adds to the burden, with only 1% of the people requiring palliative care in India receiving it.²⁸ On the other hand, the SDGs focus on attaining universal health coverage for all.

SDGs aim to create a fair and equitable world without one being left behind. The emphasis of the SDG on health focuses on universal access to quality healthcare and healthy life from birth to death for everyone, regardless of age, gender, or ethnicity.²⁹ As a multisectoral approach, SDG incorporates public health initiatives, primary healthcare, and patient-centered care into an integrated healthcare system.¹⁷ The indicators of good health are about promoting and protecting good health and well-being, preventing ill health, and prolonging life with a focus on dying well.³⁰ Even though the current access to palliative care is mainly in the developed world, especially in Europe and America, palliative care practices in Western countries still face limitations in being sustainable.^31,32 Studies have identified that people prefer to die at home and be with family during their last days of life, but notably, around 56% of people receiving palliative care die at hospitals or hospice centers, challenging their quality of death and dignity toward end-of-life care.³³

In an effort to bring sustainable healthcare initiatives, universal health coverage, being one of the major objectives of SDG-3.8, intends to integrate publicly funded palliative care services into primary care.²⁵ By incorporating palliative care into primary healthcare, improved access can be ensured. Along with that, factors like enhancing capacity, enriching the awareness, providing continuous training, and strengthening the monitoring and evaluation system of the palliative care team, from healthcare professionals to community palliative care volunteers, are essential to maintain the sustainability of palliative care initiatives.³⁴ The SDGs and palliative care work toward providing universal health coverage, access to essential medicines, and relief from pain and suffering by managing symptoms, providing holistic care, and ensuring a life with dignity for everyone. Palliative care, by these means, contributes to the health and well-being of a population of public health priority: the seriously, chronically, and terminally ill.

Community palliative care in Kerala: A unique model

The palliative care movement in India has a history of 30 years, and access to the same in India is scattered into a few urban pockets, except for Kerala. Kerala has almost universal access to palliative care.³⁵ The palliative care movement in Kerala began in the early 1990s and was greatly influenced by socioreligious movements.³⁶ A group of doctors and social activists have identified the gap in addressing the physical and emotional pain and suffering of patients and the psychological, social, spiritual, and financial factors contributing to it, paving the way for the initiation of an outpatient clinic in Kozhikode government medical college in 1993.³⁷ The clinic was accessible and free for all poor patients in need.³⁸ A nongovernmental organization, the Pain and Palliative Care Society was later formulated in 1995 to support the administration and fundraising of the outpatient clinic for its smooth operations.²⁰ The palliative care movement became widespread by establishing many similar palliative care units across the state, especially in Northern Kerala, by nongovernmental organizations and community based organizations (CBOs). The introduction of palliative care policy in Kerala in 2008 was further momentous for the palliative cares.

Palliative care policy of Kerala

Interestingly, the palliative care policy was inspired by the community palliative carers operating in the state, rather than otherwise.³⁹ The palliative care policy of Kerala, developed in 2008, was the first palliative care policy in Asia.⁴⁰ The policy was developed to ensure that every person in Kerala has access to palliative care services. The prime focus of the policy was to provide good quality care at home, apart from primary, secondary, and tertiary healthcare services, through the support of community participation. The home-based care demonstrated in the policy could eliminate the financial, social, and personal hardships of patients and their families to an extent. The model strongly emphasized on the community participation and volunteerism. Under the leadership of the local government, palliative care services were integrated into primary healthcare, ensuring the continuity of care and a channel for sustained care practices. Another core dimension of the policy is the public–private partnership, where NGOs, CBOs, private and public hospitals, and the local government collaborate and work together to expand service delivery, mobilize resources, and enhance the quality of care that safeguards the dignity and well-being of the patients. By highlighting the need to provide access to affordable essential medicines for all and the availability of drugs like opioids, the policy sets an example for comprehensive care. The policy also emphasizes catering training and capacity building for healthcare providers and palliative care volunteers from the community to deliver quality and holistic care that includes physical, emotional, and spiritual support. The services and care are designed for each individual, considering and respecting their sociocultural values, and the patients make decisions regarding care.⁴¹

Kerala has demonstrated a palliative care model that is sustainable, community-driven, and people-centric. The unique features of Kerala’s palliative care model can be attributed to the state’s sociocultural, health care, and educational context.⁴² Kerala’s model of palliative care is unique in its approach and operation, and it is characterized by some important features that contribute to the health and well-being of patients and their families.

Home-based care

As discussed earlier, the palliative care movement in Kerala began in the 1990s. However, its reach was limited and mostly run as clinics, making it inaccessible to many in need, especially those in terminal stages and living with painful conditions. It was then that many palliative care units expanded their services to home care service delivery with the help of healthcare professionals and trained community volunteers to address these gaps. The home-based palliative care approach has reduced the burden of unnecessary hospital admissions and visits, which have helped families overcome the huge financial struggle for hospitalization, transportation, and medication.^14,43 Another major factor that has led to the initiation of home-based care was the preference of patients suffering from long-term or terminal illnesses, who preferred to stay and die at home during their end-of-life care.⁴⁴ For that matter, the community volunteers were provided with basic training to dress the wound and administer the medicine to the patients in case of emergencies.⁴⁵ A typical home care unit consists of physicians (whenever required), nurses, social workers, and community volunteers, reaching the patients daily, weekly, or fortnightly as per their requirements. The home care units have taken care of the physical, psychological, and other aspects of the illness, as well as treatment and care, including primary nursing care, distribution of medicine, counseling, and support for other psychosocial needs.

Holistic care

The available evidence documents that Kerala’s palliative care model provides holistic care.^31,44 The palliative care teams in Kerala address the physical aspects of the illnesses and consider the patients’ and their families’ psychosocial, spiritual, and emotional needs, adhering to their cultural and social values. Therefore, palliative care is a holistic approach, unlike conventional healthcare practices that focus solely on the physical aspects of illness. The community palliative care initiatives focus on reducing the financial and caregiving burden of the family through its home care initiatives and support of community volunteers’ participation in caregiving. The multidisciplinary team of palliative care consists of physicians, nurses, social workers, and psychologists who contribute to meeting the different needs of the patients.

Community involvement

The development of palliative care in Kerala can be attributed to community-owned networks’ initiatives and organizations like Neighborhood Network in Palliative Care (NNPC).⁴⁶ Initially, community participation was limited to nursing volunteers and donations, but with the initiatives of such organizations, the community’s involvement in decision-making and taking ownership of delivering and addressing healthcare needs has resulted in the development of the community palliative care model.⁴⁷ With the collaboration of local self-governments, healthcare professionals, social workers, and other palliative care volunteers, this integrative approach has taken ownership of supporting families to meet their financial and medical needs by mobilizing resources from the community through community participation.⁴⁸

Sustainability

Palliative care promotes its sustainability by incorporating support from government, nongovernmental organizations, and community volunteers. The community palliative care approach provides home-based care free of cost and supports the family with medicines and other healthcare requirements.⁴⁹ The resources for operating community-based palliative care and home-based healthcare delivery services are procured from within the community as material, monetary, and human resources. By offering home-based and free-of-cost care, the financial burden and healthcare expenditure have also been substantially reduced, paving the way for patient access to long-term and continued care.³⁵ Also, the healthcare administration and the palliative care workers have designed a culturally and socioeconomically appropriate and acceptable model for long-term service delivery to sustain the initiative.⁵⁰ Some palliative care in Kerala also ventured into social entrepreneurial activities to maintain financial sustainability and provide livelihood opportunities to patients’ families.⁵¹

Local self-government initiatives

The introduction of the palliative care policy in 2008 in Kerala has facilitated local self-government involvement in delivering palliative care. The support was extended in two forms. First, the local government supported existing community palliative care. Second, new palliative care was initiated where such a facility did not exist. This has facilitated the universal coverage of palliative care services in Kerala. Local self-government involvement in health through palliative care facilitates achieving SDGs, health, and well-being.⁵² The local self-government initiatives implementing universal health coverage through palliative care have received increased global attention.⁴⁶ More than 200 NGOs and the local self-government work toward the community palliative care initiatives that cover around 900 panchayats with a population of approximately 35,000–45,000 each, and each panchayat has trained nurses and volunteers to conduct home visits to provide healthcare services to patients regularly.⁵⁰

Implications of Kerala’s community palliative care model for SDG-3

Kerala’s community palliative care model (Figure 1) has received much acclaim worldwide, with WHO recognizing the NNPC initiative as a demonstration project.²⁰ The state government of Kerala declared palliative care an essential and integral component of standard healthcare and adopted the palliative care policy in 2008.⁵³ Kerala became widely recognized for its community-oriented palliative care initiatives spread across diverse settings, from government and private hospitals with inpatient and outpatient services to nongovernmental organizations with home-based care.⁵⁴ Kerala’s community palliative care initiatives demonstrate an accessible and holistic approach to care through the active participation of trained volunteers by setting up community-based outpatient clinics and supportive home care services, which align with the targets of universal health coverage and SDGs.⁴¹ On the other hand, the initiative also focused on empowering families and the community to take care of the needs of the patients and their families. The support rendered through the community palliative care model also emphasizes the health and well-being of patients’ caregivers.⁵⁵ The psychosocial support offered to the caregivers during the illness of their dear ones and through the bereavement process has ensured the notion of SDG-3, that no one is left behind.

Figure 1.

Kerala model of community palliative care initiatives and SDG-3.

Kerala developed the Arogyakeralam project in 2008 to implement the pain and palliative care policy.⁵⁶ The project demonstrates a unique approach to palliative care by integrating the public healthcare system into a community-based model. The project considers home-based medical care the key element of palliative care support services. It also mandated that the local self-government incorporate palliative care into their planning and budget allocation.⁵⁷ This paved the way for developing a robust support network of healthcare workers, community nurses, social workers, community volunteers, and caregivers. The success of the project lies in continuous training, resource mobilization, and fundraising through the support of NGOs and CBOs that have significantly improved the quality of life and death of many chronically and terminally ill persons in the state. Kerala always stood as an exception regarding quality of death and end-of-life care, despite India finishing at the bottom among 40 countries in the first quality of death index developed by the Economist Intelligence Unit in 2010.^58,59 These factors made the project unique, successful, and a replicable model for all the developing and resource-poor settings worldwide.³⁸ Later, in 2017, the Lancet Commission has therefore expanded the scope of palliative care as “an essential component of comprehensive care for persons with complex chronic or acute, life-threatening, or life-limiting health conditions that should be practiced by all healthcare and social care providers and by palliative care specialists, and that can be provided in any healthcare setting, including patients’ own homes.”⁶⁰ This multidisciplinary and multidimensional care approach can be recognized as having major implications for SDGs.

Closely aligning with the SDG-3 of healthy lives and promoting well-being for all at all ages and working toward achieving goal 3.8 universal health coverage that provides access to all people to promotive, preventive, curative, rehabilitative, and palliative care, the Kerala model of palliative care is an exemplar that emphasizes the need for sufficient quality of care without putting the patient or their families to financial hardship. Thus, the model focuses on bridging the unequal access gap to care by making palliative care universal and accessible to all in the state. The major advantage of this approach is that the general public receives health care without having to suffer the financial burden associated with it and that they are entitled to coverage irrespective of their sociocultural and economic background.⁶¹ Therefore, the inclusion of palliative care in primary healthcare as emphasized by WHO’s Astana Declaration and the Alma-Ata Declaration, which highlights that the continuity of care, including end-of-life care, should be comprehensively addressed by primary healthcare without bringing financial burden to the patients, and their families are essential to achieve universal health coverage.^62,63 Since the Alma-Ata Declaration, there has been debate over choosing a comprehensive or selective primary healthcare approach. The government of India has chosen the comprehensive primary healthcare approach that integrates the promotive, preventive, curative, rehabilitative, and palliative care approaches. The Kerala government, as a response to this, initiated the Aardram mission in 2017, which is one of the four pillars under the “Nava Kerala Mission,” the flagship program of the state to achieve SDG-3 and comprehensive health care through primary health centres.⁶⁴ Mission Aardram aims to redefine strategies to achieve SDGs in the context of Kerala, as the state’s health status differs from that of the rest of the country. The initiative shares similar goals and works toward achieving SDG-3 by setting up targets of short-term goals by 2020 and long-term goals by 2030, considering the state’s unique health status.

Learnings from the Kerala model, its replicability and way forward

Considering their socioeconomic, cultural, and political context, the Kerala community palliative care model can be replicated in other states or countries. The Kerala model was successful as it was designed to align with the sociocultural context, existing healthcare infrastructure, and state community dynamics. Also, it is necessary to note the importance of building partnerships and collaboration with the government, NGOs, and local communities to effectively replicate and implement, as these networks can ensure the project’s sustainability by pooling exciting resources. The Kerala community palliative care model can bring valuable lessons for developing and resource-poor countries where community-based intervention is necessary. With countries aiming to achieve the SDGs, replicating the Kerala model of palliative care that focuses on equitable access to health care, cost-effectiveness, and sustainable community participation can help align with goal 3 of good health and well-being and achieve similar health outcomes.

Though the palliative care model of Kerala has been widely acclaimed and positive, it has certain limitations and challenges. Addressing those issues is critical to making the services more accessible and effective and contributing meaningfully to SDG-3. First, a major source of funding for palliative care in Kerala comes from contributions and donations from the community. Though it has been sustained over the years, not all palliative care units across the state could generate financial resources through these means. Hence, looking for alternative financial resources for palliative care is timely. Some of the palliative care units have initiated social enterprise models to generate viable means of financing. However, it is limited to a minimum number of palliative care units and requires further expansion to ensure sustainability.

Second, the palliative care services in Kerala, though identical across the regions differ in how services are delivered and its quality. For instance, the difference is evident in the magnitude of service from the northern region to the southern region of the state, where the earlier had a better widespread presence. Similarly, the services offered by government-run programs and those run by nonprofit community-based programs also differed. We have observed from the field that the latter offers more comprehensive services. Hence, any inferences made from Kerala’s model of palliative care should consider these aspects. Third, palliative care service delivery in Kerala is sometimes criticized for being a volunteer-centered program. Though volunteers are the backbone of the model’s success, sometimes, their over-involvement may create adverse patient outcomes. Some palliative care providers lack consistent services from physicians.⁶⁵ This may result in poor service delivery, which should be addressed.

Conclusion

The article sheds light on the implications of palliative care for achieving SDG-3, health, and well-being. Kerala’s community-driven and people-centric healthcare approach offers profound insights for sustainable healthcare initiatives. This model depicts how grassroots-level initiatives through collective action can significantly transform healthcare delivery in the context of a growing proportion of the aging population and chronic illnesses. Through its incorporation into the primary healthcare system and the collaboration of government, NGOs, and community volunteers, the healthcare delivery system has widened its horizon by providing free and accessible care for all and ensuring health and well-being. The adaptability and sustainability of the Kerala model offer a replicable framework for other low- and middle-income countries where resource constraint is a challenge to equitable access to health care. Future research should focus on empirically evaluating the contribution of Kerala’s palliative care and similar models to achieve SDG-3.

Footnotes

ORCID iD

E. P. Abdul Azeez

Ethical considerations

This study doesn’t involve human subjects, so no ethical approval is required.

Author contributions

S. Gowri: Conceptualization; Writing – original draft.

E. P. Abdul Azeez: Conceptualization; Supervision; Validation; Writing – review & editing.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

Not applicable.

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Palliative care policy and practice in Kerala,India: Implications for Sustainable Development Goal 3—Health and well-being

Abstract

Keywords

Introduction

Palliative care and SDGs

Community palliative care in Kerala: A unique model

Palliative care policy of Kerala

Home-based care

Holistic care

Community involvement

Sustainability

Local self-government initiatives

Implications of Kerala’s community palliative care model for SDG-3

Learnings from the Kerala model, its replicability and way forward

Conclusion

Footnotes

ORCID iD

Ethical considerations

Author contributions

Funding

Declaration of conflicting interests

Data availability statement

References