Need of community-based palliative care in rural India and factors that influence its sustainability: a comprehensive exploration using qualitative methodology in rural Puducherry, India

Abstract

Background:

The existing palliative care services in India are concentrated in urban areas, attached to tertiary care hospitals. This poses issues relating to access and equity for people in rural locations and with low socioeconomic status. A Community-Based Palliative Care (CBPC) service named Sanjeevan has been initiated in Puducherry, a union territory of India to provide physical, social, psychological, and emotional support to incurably ill people, including older adults living in rural areas.

Objectives:

To understand the social mechanisms that underpin the implementation of CBPC in rural parts of India and the challenges to its sustainability.

Design:

Qualitative research using focus group discussions (FGDs) and key informant interviews (KIIs).

Methods:

Community-based participatory research (CBPR) approach was used in this study, and descriptive analysis was done. Through CBPR it was possible to document and interpret local knowledge on the community concerns and assets along with the experiences of the community members. Purposive sampling was used to identify vocal participants involved in patient care and areas of the Sanjeevan program such as financial management, administration, and community mobilization. Seven KIIs and four FGDs were conducted, with 7–8 participants in each.

Results:

The analysis indicated the need for a CBPC and the factors enabling its establishment. The findings revealed capacity building, resources for palliative care services, and the existing social structure of the community being the main challenges that need to be overcome for better penetration of CBPC services into society. Demand generation through sensitization and administration of services based on the need and regular follow-up remains the key strategies for the sustainability of the program.

Conclusion:

The CBPC program like ‘Sanjeevan’ adopted in the rural area of Puducherry can be cited as an example and can be replicated in other rural settings with similar sociocultural characteristics to support people living with end-stage diseases.

Introduction

With a slowly ageing population, India finds itself at the crossroads of demographic transition. Although rates of ageing are heterogenous when considered across state lines, several states are now experiencing a boom in the population aged over 65 years. At the same time, this demographic increasingly lives in rural areas with low socioeconomic status.^1,2 From 1991 to 2011, the population of older adults doubled from 57 million to 104 million, becoming 8.7% of the total population. This is expected to increase to 19% by 2050.^3–6 Such changes will bring an increase in care needs for people with age-related disorders, the majority of these being non-communicable diseases. Palliative care is an approach to improve the quality of life for people experiencing a serious incurable illness or old age with a goal to relieve the suffering of patients and their family by promptly identifying, accurately assessing, and effectively addressing the physical, emotional, and spiritual difficulties contributing to distress. ⁷ At present, existing palliative care services in India are concentrated in urban areas, attached to tertiary care hospitals and cancer centers. This poses issues relating to access and equity for those people in rural locations and with low socioeconomic status.^5,8 Existing public health systems are not adequately equipped to meet the increasing needs of older people and are yet to adopt policies with a primary focus on enhancing the quality of life of older people.^1,5,9

COVID-19 has exposed the existing inequalities in accessing care for the older population globally. This has been especially so in developing nations with limited access to resources and has brought issues relating to dignity in death to the forefront of people’s minds.^10,11 Examples of home-based palliative care from across the world have demonstrated how disruption to services, such as those seen during the pandemic, can be overcome to provide the necessary support for the medically and socially vulnerable members of an ageing population.^10,12 In resource-limited settings, access to palliative care has been improved through community empowerment programs similar to community-based palliative care (CBPC) services.^13,14 While such programs have been shown to be clinically and economically effective,^15,16 establishing them in a sustainable way in communities for which this remains a foreign concept, poses significant challenges.

In 2012, India developed the National Program for palliative care with several objectives including the promotion of community-owned initiatives supporting the healthcare system. ¹⁷ In order to achieve this, it is necessary to obtain a comprehensive and contextualized understanding of the social mechanisms that underpin the implementation of CBPC in rural parts of India as well as the challenges to its sustainability. This study considers the case of implementing CBPC in a rural part of Puducherry. In doing so, we seek to understand both the needs people face and also the factors that influence the sustainability of CBPC in rural India.

Methodology

Study area

Puducherry, a union territory of India, has a population of over 1.2 million with 31.7% of people residing in rural areas. ¹⁸ The per capita expenditure on health services in the union territory is Rs. 1658, and the healthcare services are provided through a network of primary health centers, subcenters, and eight government tertiary care hospitals. In addition to this, there are also privately funded hospitals. ¹⁹ Population aging has had a profound impact on the economy and society of the union territory. About 1% of older adult females residing in rural areas and 13% and 11% of older adult females and males, respectively, residing in urban areas, were found to be economically dependent on others. Furthermore, the illness perception, which is any deviation from the state of physical or mental well-being among the elderly males and females residing on the union territory is 57% and 70%, far above the national average of 31%. ²⁰

CBPC in Puducherry

A CBPC service named Sanjeevan has been initiated as a project in Puducherry by the Institute of Palliative Medicine (IPM), Kozhikode, Kerala in collaboration with Non-Government Organizations, Sri Aurobindo Society and HelpAge India, New Delhi (in the beginning) and a prominent tertiary care hospital in the area. Through CBPC in this context, the attempt is to address the non-medical issues alongside medical ones with an aim to practice an integrated approach of providing physical, social, psychological, and emotional support to incurably ill people, including older adults, living in rural part of the union territory. The unit was initiated in 2013 and serves over 3000 people from about 160 villages at present.

Study design and participants

The research was participatory in nature where the community members and the researchers participated as partners to conduct the research. The main approach used in the study was community-based participatory research (CBPR) approach and descriptive analysis to data and knowledge generation.^21,22 Through CBPR, it was possible to document and interpret local knowledge on the community concerns and assets along with the experiences of the community members. ²³ Data were collected via Focus Group Discussion (FGD) and Key Informant Interviews (KIIs). The FGD was used to generate a shared understanding between researchers and grassroot workers in community-level palliative care who have experienced difficulty in accessing palliative care services in their society. We used purposive sampling to identify participants who were vocal and had been involved in patient care as well as other areas of the Sanjeevan program such as financial management, administration, and community mobilization. Respondent-driven sampling was also used to identify the participants involved in patient care who had experienced difficulty in accessing palliative care services before the initiation of this program in their area. Recruitment continued until theoretical saturation was achieved. This was determined by the redundancy in the data and information collected in the study. Seven KIIs and four FGDs were conducted (See Table 1 for details). FGDs were conducted with staff members from the Sanjeevan program; community volunteers, who assist in field activities while also helping the palliative staff members in identifying the patients in need of care in the rural villages; Anganwadi workers, outreach workers of Integrated Child Development Service Scheme, and finally Accredited Social Health Activist (ASHA) workers, a group of motivated women recruited through National Health Mission who have received training in palliative care and assist in CBPC services.

Table 1.

List of focus group discussions and key informant interviews.

Key informant interview	KII 1	Palliative care professional (PCP) A medical doctor who has received specialized training in palliative care services
	KII 2	Member of legislative assembly from the Union territory (MLA)
	KII 3	Member of the NGO (MNGO)
	KII 4	Medical professional from tertiary care hospital (MPH)
	KII 5	Project coordinator of Sanjeevan (PC 1)
	KII 6	Project coordinator of Sanjeevan (PC 2)
	KII 7	Project coordinator of Sanjeevan (PC 3)
Focus group discussion	FGD 1	Accredited social health activist (ASHA) workers who assist in field activities (ASHA 1–8)
	FGD 2	Anganwadi workers (AWW) who assist in field activities (AWW 1–8)
	FGD 3	Sanjeevan palliative care team members (SPCT 1–7)
	FGD 4	Community volunteers (CV 1–8)

Data collection procedure

Participants selected for KIIs were contacted by telephone to gauge interest. If interested, the date, time, and place of the interviews were fixed based on the convenience of the interviewee. KII 1 and 2 were conducted over an online platform, and other interviews were conducted at Puducherry at places as suggested by the participants. Researchers trained in qualitative interview techniques conducted the interviews using an interview guide. The interview guide was informed by expert discussion (Table 2). The interviews were participant-led and lasted between 1 h and 1 h 45 min. The FGDs were conducted at the Sanjeevan palliative care office in Puducherry. The date and time were fixed based on the convenience of the participants and were conducted using the FGD guide. Each discussion lasted between 1 h 30 min to 2 h. The data obtained from interviews and discussions were recorded in the native language before being transcribed and translated into English. To enhance participant reliability, all the participants were provided with the opportunity to refuse or withdraw from the study at any point. During the interview, iterative questioning using probes helped ensure reliability and contributed to the depth of data. Rigor was achieved through credibility, transferability, dependability, and confirmability. ²⁴

Table 2.

Interview guide format used in the study.

Topic	Main question	Follow-up question	Probe question
Strategies	What were the strategies developed in initiating a palliative program in rural India?	How have those strategies evolved with time?	What were the advantages and disadvantages of the strategies adopted?
Influence of social factors	How has the social structure existing in a rural setting influenced the development of such a program?	How do people of different social strata and different cultural beliefs view the program?
Roles and responsibilities	How did community healthcare workers become a part of the project?	How were the roles and responsibilities divided among the stakeholders?	List the roles of each stakeholders
Challenges	What were the main challenges in implementing the program?	How could you overcome the challenges?	What were the supportive factors?
Demands of the patients	How well does the program meet the needs and demands of the patients?

Data analysis

We conducted a thematic analysis of the data. The analysis was done manually using a hybrid coding technique. ²⁵ The transcripts were read multiple times by two researchers independently. Patterns within the data were grouped into categories. Comparisons were then made between categories independently before being rigorously discussed amongst the research team. The themes and subthemes were developed and finalized after multiple discussions involving all the researchers. Theoretical triangulation was conducted by comparing and contrasting the themes with published literature.

Results

The analysis led to the emergence of four main themes with several subthemes and categories (Table 3).

Table 3.

Themes, subthemes, and categories emerged in the study.

Sl no	Themes	Subthemes	Categories
1	Need for CBPC in rural Puducherry	Abandoning people with end-stage diseases to a painful death	Lack of knowledge and misconceptions
			Social and cultural factors
			Inability to provide care
		Difficulties in accessing tertiary care palliative services	Financial constraints
			Transportation difficulties
			Untoward behavior of medical professional
2	Factors that influence its establishment	Knowledge and attitude toward palliative care	Community sensitization
			Identification of population in need of assistance
			Community participation and volunteerism
		Quality of palliative care	Patient satisfaction
			Availability of trained professionals
			Adopting evidence-based guidelines
			Evaluation of services
		Empowering palliative care patients through comprehensive care	Pain management and physical support
			Providing psychosocial support
3	Challenges	Capacity building	Capacity building at the community level
			Training at regular intervals for all service providers
			Imparting communication and leadership qualities
		Resources for palliative care services	Human resources
			Material and logistic support
			High expectations of services
		Social structure of the community	Caste system and related factors
			Resistance to acceptance of services
4	Strategies for a sustainable CBPC in a rural setting	Assisting communities to establish CBPC services	Community ownership
			Integrating CBPC services into grassroot level
		Service administration based on need	Categorization and prioritization of patients
		Methods ensuring regular follow-up and inpatient services for specialty care	Integrating the service into primary health center
			Capacity building of primary health center
			Establishment of referral services
			Private–Public partnership

CBPC, community-based palliative care.

Need for CBPC in rural Puducherry

Abandoning people with end-stage diseases to a painful death

All key informants were of the opinion that a large proportion of people living in rural Puducherry face acute poverty to the extent that at times they were incapable to provide food to their children, and when elderly individuals become sick, abandoning becomes a solution. The poverty had pushed them to work for daily living, and they find no time to take care of the sick at home or to volunteer for such activities.

There is a huge amount of black space due to illiteracy and the resultant ignorance among people. When they see a cancer patient with maggots from the ulcer over the huge mass, they consider it infectious and believe that by touching such people it might spread to them too. Such patients were then abandoned. PC 2, KII 6

Participants also expressed the opinion that people’s cancer, and their resultant painful death, were linked to sins from a previous birth or curses and associated guilt. These beliefs made cancer a highly stigmatized condition meaning that even affluent people would hide people with cancer in their backyard or abandon them in distant places.

There was a cancer patient in a distant village whose children are working in the government sector with good salaries. But when their mother became sick with cancer, they just abandoned her on road and when we enquired they said ‘if people working in the office come to know her illness while visiting home, they might see him differently.. in a wrong way’. PC 3, KII 7

Difficulties in accessing tertiary care palliative services

A significant proportion of the people living in rural Puducherry were described as having no resources to get to a hospital. This would mean people were left to suffer and die from the end-stage disease often in significant pain.

For people living in rural Puducherry, seeking treatment from a good hospital is a tough task, they have to board buses to reach the faraway hospital located in the urban area and these sick people can’t even get on the bus, and hiring a vehicle is costly, so they surrender themselves to the sufferings. Community volunteer, FGD 4

The key informants suggested that when patients were taken to the hospital, they were repeatedly subjected to multiple investigations. This was felt to be a direct result of doctors in tertiary care not being trained to provide palliative care services. Furthermore, doctors working in tertiary care hospitals were described as overburdened by the volume of patients. This meant that people with end-stage disease were not prioritized. This in turn produced a sense of neglect among the patients and those involved with their care.

My own grandmother passed away from stomach cancer suffering severe pain, she had dementia too and doctors in the tertiary care hospital informed us that nothing much can be done from their side. We didn’t know anything about palliative care and there was no program like this at that time. PC 2, KII 6 (The time frame mentioned by the interviewee was early 2000)

Factors that influence its establishment

Knowledge and attitude toward palliative care

The participants described how most people living in rural Puducherry exist within the constraints of a social structure defined by caste hierarchy, poverty, and illiteracy. As a result, many people were not aware of palliative care and what it might offer.

When we went in the beginning, some commented that ‘doctor has said it is incurable, so what are you going to do now? We do not need anything.’ They were skeptical indeed. MPH, KII 4

When Sanjeevan was established in Puducherry in 2013, a strategy of ‘Sensitization-Training-Identification’ was put in place. Sensitization was provided to different categories of people, from the medical community to lay people, using different techniques. This was followed by the provision of appropriate training based on the willingness to work and equipping them to identify the people in need of assistance from the community.

Initial meetings were held with multiple stakeholders working in different fields in different villages in the area, such as local politicians, Police, school teachers, student community, ASHA workers, AWWs, and the basic concept was introduced and informed them that the program is purely service oriented and have no conditions or strings attached with. If you are willing to help the people in your society who suffer from end-stage diseases and need care, let’s work together. PCP, KII 1

All the project coordinators were of the opinion that sensitization was the key to successfully integrating CBPC. Each visit brought different methods to raise awareness, such as street plays and social service camps. Despite this, in certain villages, it was only on the 10th visit that people began to recognize them. However, with repeated conversations, the level of community participation started to increase and more people began volunteering for the program.

The first social interaction for the program was through theatre in the form of street performance. It helped to reframe palliative care as a social cause. Unlike the conventional palliative program, we did not start with a hospital or with few doctors and nurses. We started with the community. But in the first street play in a village, no one turned up. But in the second performance, the acceptance was better and people started coming forward and likewise, the team conducted more than fifteen street plays for sensitization alone. PCP, KII 1

Quality of palliative care

All participants were of the opinion that the main factor that led to the acceptance and establishment of the CBPC in Puducherry was the improvement in the life of patients suffering from end-stage diseases. The quality of palliative care depends on professional training and motivation among the service providers.

At present 648 AWWs and approximately 320 ASHA workers are involved in CBPC in rural Puducherry. We were provided with a 3 months training before being a part of this program and now once in every three months we are updated with newer techniques in patient support and first aid. AWW, FGD 2

The palliative care professional informed us that the training was provided to medical, nursing professionals, and volunteers using a structured module specific to each category of service providers. The group participants believed that the biggest issue that people with end-stage disease face is the lack of emotional support. They were often unaware as to whom should address these issues and from where could seek help. In the Sanjeevan program, training was provided not only for medical care but also to equip the community service providers to interact, guide, and support people emotionally. For community volunteers, it starts with a 3 h basic orientation followed by fifteen hours of training sessions divided over 3 days. By the end, volunteers would be trained to identify the patients in need of care from their community and to provide the necessary support.

The quality of services is also ensured by regular evaluation as informed by the project coordinators. The activities at the grassroot level are evaluated and strategies to improve the services are provided by senior medical professionals working in association with the program.

I collect reports every month regarding the activities performed in my constituency and also have direct contact with several patients who receive the care. I regularly try to interact with the service providers and the patients for feedback from both ends to ensure the quality and to improvise measures to increase its awareness. MLA, KII 2

Empowering palliative care patients through comprehensive care

The feeling of helplessness and absence of support for terminally ill people would often leave them feeling isolated and disempowered. Many participants believed that in a rural setting, with no palliative care support available, people with end-stage disease were at the mercy of their families. Providing physical care and psychosocial support at the time of need improved the quality of life and thereby the dignity of patients in the family. With time, this has empowered them with better control over the decisions and actions affecting their health.

The project coordinators explained that, after the first training program on the 20 October 2013, the first home care visit by the team was conducted on 30 November 2013. At this point, six patients were enrolled in the program. Over the following 7 years then the project has grown and there are now more than 3000 patients enrolled in the program. The journey was a slow process and had to overcome several points of resistance. However, through compassion and by employing a comprehensive approach, participants now have access to physical, emotional, and social support. The Sanjeevan program also provides food grains for terminally ill and abandoned patients.

When we go for house visits, we sit with the patient, talk to them, clean their ulcers, and feed them if needed and used to provide emotional support at times. When we, a total outsider started taking care of these people and seeing the way they respond to us with more life and energy, the family members also started realizing the need for such care. PC 1, KII 5

Challenges

Capacity building

The majority of the key informants observed that, unlike the conventional palliative care services seen in hospitals, in CBPC the role of a medical professional is less and active participation of the community health care workers and trained volunteers are more prominent. This means that there is a need for investment of skills in the community and capacity building at the community level including the caregivers. However, it was suggested that in places where conventional palliative care was in place, community-based capacity building was resisted in fear of excluding medical professionals.

In the initial period, community participation was not sufficient to maintain services and the people who volunteered became overburdened. The project coordinators believed that the involvement of ASHA workers and Anganwadi workers in the program was positive, especially in the initial stages as these grassroot level workers, who were already in the community, were not only trained but were widely accepted among local people. Their involvement in CBPC ensured the optimum amount of support needed for the program and also enhanced community participation.

Unlike Kerala, where CBPC was successfully established in integration with the local governance, in this setting the interphase was not that smooth. However, with regular sensitization programs when more people from the community became a part of the program autonomy was established within itself and that was a turning point for the program to dive deep into the society. PCP, KII 1

Resources for palliative care services

Be it in the form of human resources, or other logistic support, meeting the project’s bold aims required significant resources. Beyond what was first expected, it quickly became clear that people also required nutritional support and financial aid. At present through the Sanjeevan program, nutritional support is provided to 61 palliative care patients.

As time passed, demand from the people started increasing, but in certain villages, we were able to meet all the demands, but in certain remote villages we are still facing difficulty due to social setup, lack of volunteers, and difficulty in accessing areas. MPH, KII 4

The key informants who had all been part of the program since the beginning explained that the program was initiated in three villages in the beginning, and the doctors and nursing professionals were hired on a part-time basis. With the increase in demand for services, additional resources were provided in coordination with two medical colleges in the area and full-time staff were hired. The personal vehicle of the project coordinator was used to travel across the villages initially. Now, the program owns two bikes and a van for field visits.

In a village with around 4000 population, we are able to provide home visits to only 15-20 patients in a month. We do not want to overburden ourselves as otherwise the quality would be compromised. Our dream is to provide one volunteer for each patient. But for that we need to train at least 10 lakh people, if we train 50 people, only five will turn up to work after training, and out of these five only three will work actively in the community. PC 3, KII 7

The project coordinators suggested that during the initiation of the program, the village people believed that the CBPC was not different from hospital-based palliative care, and all the facilities would be made available at the household level. Also, on introducing the program in certain villages which were previously affected by the tsunami, people started expecting commodities free of charge as this was their experience from NGOs working in the area. To tackle the situation, the program was re-termed as ‘anbin vazhi maruthwam’(meaning medicine through compassion in the native language). This enabled local people to understand that, it is a service that runs for people in need of care, comfort, and compassion.

Social structure of the community

Key informants explained that successfully embedding a new concept into a community is dependent on strategies that minimize disruption to the communities existing systems. In a rural setting in India, caste and the associated discrimination is a reality of daily life. All participants spoke about how they had faced issues of caste discrimination, that people belonging to a higher caste would not let a volunteer belonging to a lower caste inside their home, even if the volunteer had come to help the sick and dying person in their home.

Once when I went to inaugurate the palliative program in a village, I had to inaugurate the function twice as people from two different castes were assembled there and requested to deliver the speech separately as they wouldn’t sit together. MPH. KII 4

The project coordinators were of the opinion that the main challenge in the initial years was to make the program acceptable to the people in the village. In rural Puducherry, a spectrum of responses was received from different villages for the CBPC program. At one end of the spectrum, there were village people who came forward with both monetary and logistic support and expressed willingness to volunteer in their community. On the other end, some people were skeptical and reluctant to cooperate. Many people, often from literate and affluent parts of society, neither volunteered nor disturbed the process, but remained silent observers.

There is no single concluding factor that has brought this difference between the villages, per se in these villages there was no political or social activism, and caste and illiteracy play a major role. However, in certain villages, we were lucky to find some sort of activism or few people who were compassionate to help others and we channelized them for this cause to help their own people. PC 2, KII 6

Strategies for a sustainable CBPC in a rural setting

All study participants believed that it is not possible to create a transferable blueprint that can be used in different settings. Each context is unique, the political awareness and literacy level influence the decision-making, and acceptance of a program at the community level will all vary significantly. It is therefore essential that each society needs to adapt to an existing structure to establish CBPC successfully.

Assisting communities to establish CBPC services

The question we used to ask ourselves was what is the real purpose of CBPC? Do you want the community to be active or do you just want to go ahead with the services provided through medical and nursing professionals? PC 1, KII 5

Key informants suggested that enlarging the pool of volunteers and supporting them to identify the needy and provide basic palliative care through regular training was a priority. This way, the palliative team stood as a supporting system to the community while also providing the power of ownership to the community.

Each community was different, we had to meet each stratum of society separately like self-help groups, students, main officials of the village, and politicians to sensitize them and to provide training if interested to be a part of CBPC. PC 3, KII 7

The project coordinators explained that the local leaders were skeptical in the beginning, but once they understood the concept and witnessed the improvements for people receiving the care, they were ready to collaborate. Beyond this, there was a recognition that working in collaboration with such a project would afford political benefit which acted as a further incentive. Key informants believed that with political support, it was much easier to achieve community acceptance and community participation became possible. With more community participation and involvement in the form of volunteers, people started recognizing their role and their importance within CBPC. People developed communication skills and leadership qualities, which were passed on at regular intervals through structured training provided by the palliative team.

Service administration based on need

The group participants spoke about how it was not possible to provide services to everyone. Instead, when a person requested input, a member of the team would assess them. The decision to provide palliative care support was based on the ability of the patient to carry out activities of daily life, the availability of lay people to provide care, and the need for emotional support.

For regular patients, we provide first aid cleaning, and dressing of wounds, help them to mobilize. Also, if bystanders are available, we train them in first aid services and measures to prevent bed sores. If any serious issues are identified, the doctor is informed and examined by the team of professionals. ASHA workers, FGD 1

Participants spoke of how triaging and prioritizing patients helped sustain the program during times of increased demand. Project coordinators divided the area into zones which enabled them to distribute resources equally and effectively. Each zone contained around 700–800 patients. Within each zone, patients were prioritized for home visits according to a red, orange, and green triage system, which reflected the severity of their illness and the problems they faced. Patients belonging to the red category would be visited by a team that included a medical doctor and nurse, every week until their condition improved. At this point, they would be moved to ‘orange’ meaning they would be visited at least once every month. People categorized as ‘green’ were visited at least once every 3 months. Between visits, patients were monitored for a change in their condition by a team of volunteers who would regularly assess their condition.

Methods ensuring regular follow-up and inpatient services for specialty care

As CBPC service programs only offer home-based care, it is essential to establish links with inpatient medical services. Recognizing this, the initial strategy was to train medical professionals before integrating them into the palliative care program in the area.

Key informants were of the opinion that CBPC services need to establish networks with primary health centers and tertiary care hospitals within the area. Doctors working in primary health centers should be trained in outpatient palliative services allowing them to follow up on patients. Doctors working in tertiary care hospitals should be equipped with the necessary skills and facilities to support inpatient palliative care services. For such a network to be established and sustained, there is a need for strong political will and community support in addition to a strong private–public partnership.

Discussion

In the past decade, several nations have recognized the crucial importance of palliative care. This has led to national policies and programs that focus on finding a balance between hospital-based and CBPC services. ²⁶ In India, palliative care has become an established area of clinical practice. However, its restriction to hospital-based care has limited access to large sections of society. This disproportionately affects communities in rural areas where there is a high level of poverty and illiteracy. ²⁷ For palliative care to be more equitable, and reach a larger fraction of society, the knowledge and skills relating to care at the end of life need to be translated into evidence-based and cost-effective interventions that are acceptable, affordable, and accessible to all. ²⁸

The Lancet Commission on Value of Death published in 2022 discusses how the medicalization of dying has disrupted socially mediated relationships with death. This has resulted in the focus of end-of-life care shifting from the family and community, where it is understood as a profoundly socially and spiritually mediated process, to within healthcare systems, where death is often reduced to a physiological event. ²⁹ The commission advocates for the rebalancing of the existing death system by focusing on networks of care led by family and community members who work alongside professionals. CBPC services integrate services provided by community-based NGOs, local hospitals, peripheral public health centers, and community-based programs and therefore fall closer to the commission’s recommendations and other successful examples such as the Neighbourhood Network in palliative care model in Kerala.^29,30

In any society, death and dying are intertwined with the complexities of social, cultural, economic, religious, and political factors. Patients from lower educational status and low level of income prefer life-prolonging therapies rather than end-life treatment and also are found to be less knowledgeable about palliative care services.^31,32 This in turn influences the general response, and therefore CBPC faces barriers in penetrating the grassroot level of the communities it serves. ²⁹ Lack of awareness and capacity building at the community level, reluctance, and misconceptions due to several sociocultural factors remain the main barriers as found in our study.^33,34 These challenges can be overcome by enhancing the quality of palliative care delivery through training and empowering palliative care patients. Additional effort to create and improve community awareness through repeated sensitization in the community is also warranted.^33–35 Our study has also identified similar factors that are required for the establishment of CBPC in a rural community-based setting in low-middle-income countries.^36,37

Lack of awareness and misconceptions related to palliative care services, social and cultural hurdles, affordability of services, lack of transportation facilities, and negative attitude of the caregivers are a few of several critical issues faced by palliative care-related services in several rural as well as urban settings.^38–42 Similar issues were also identified in our study highlighting the necessity to make provisions for palliative care services in the communities they serve. In developing nations like India, there is a need to acknowledge additional challenges. These include not only logistical issues, such as hilly terrains and poor road structures, which can affect access but also socioeconomic deprivation, in particular the impact of the caste system, which adds complexity and significantly impacts access and provision of care. Our study points out that the establishment of CBPC in rural India warrants extensive community mobilization, mapping of people in need, embracing local people as volunteers, system building, training, and research. Integrating community-based services into the existing health and welfare systems, while also promoting community ownership, is crucial to making CBPC sustainable. The Sanjeevan experience of Puducherry also highlights the importance of private partnership in such initiatives.

The study puts forward a series of strategies for implementing and sustaining CBPC in the community. The latter is crucial when considering a social context with no previous experience with palliative care and limited access to resources. CBPC has the potential to not only support the patient at home but also can reduce unplanned hospitalization and thereby facilitate the reduction of hospital bed days for the patients. ⁴³ Hence in the long term, adopting and sustaining CBPC in any society will benefit the patients by reducing the hospital cost and thereby out-of-pocket expenditure in a country like India besides benefitting the health system by alleviating the burden on acute care hospitals.^14,15,44

Conclusion

The CBPC program like ‘Sanjeevan’ adopted in the rural area of Puducherry can be cited as an example and can be replicated in other rural settings of India with similar sociocultural characteristics to support people living with end-stage diseases with sustained home-based care and for dignified death.

Limitations

The study reports the results obtained from a union territory of India; hence, the level of transferability of the results will depend on the level of social, cultural, and economic complexity of the area. However, the current study had attempted to provide a place to start, lessons can be learned from Puducherry as an example of change.