Assessment of needs, challenges, and re-design considerations for culturally sensitive provision and delivery of palliative care supports and services for older adults who prefer to age and die in place in diverse India

Introduction

Specifics are limited for culturally sensitive palliative care in diverse developing countries that may not have widespread palliative care supports and services. The objective of our review article was to assess palliative care needs and provide considerations for incorporating culturally relevant domains and outcomes for the delivery of palliative care among older adults in India who prefer to age in place in non-institutionalized or non-hospital settings and prefer to die in their homes. We focused on India, a large, culturally diverse middle-income country undergoing a demographic transition. In India, a higher burden of multiple chronic conditions (MCCs) or multimorbidity, some of which can be life-threatening (e.g., cancer, stroke, debilitating neurological conditions), are contributing factors for accelerated aging for a large middle-age population, bringing many considerations on how to care for this vulnerable population (1-4). According to the India Ageing Report, the demographic transition will lead to a doubling of the proportion of older adults ≥60 years from 10% or 149 million adults in 2021, to more than 20% or 349 million by 2050 (5). This population growth of older adults in India in the coming decades calls for increased sensitivity to their needs and of their families for non-hospital based palliative care approaches to deal with the issues associated with life-threatening illnesses (6). In India, many older adults also prefer to age and die in their homes and to be taken care of in the comfort of their homes and within their communities surrounded by familiar social surroundings. Moreover, more than 70% of the older adult population in India resides in rural areas where there are barriers to transportation for seeking any clinic or hospital-based palliative care. While palliative care is for anyone regardless of age, palliative care for older adults aging in place in India has unique challenges and, therefore, is the focus of our article. Complex and MCCs are common among older adults where managing one condition can impact others negatively, and thus can have an impact on the overall quality of life (QoL). These multiple chronic and competing conditions can lead to increasingly poorer health outcomes, such as inappropriate medication use, polypharmacy, adverse side effects, and, as a result, decreased QoL, which can worsen with increasing age. Given the high rates of MCCs among older adults, palliative care is one way to address the needs of this vulnerable population. However, what constitutes palliative care for a large, culturally diverse country remains underexamined. In a cross-country comparison of 80 countries, India ranked 67 on the quality-of-death and dying index wherein palliative and healthcare environment comprised 20% of the index (7).

What is and what is not palliative care?

Palliative care is available to anyone suffering from serious illness to relieve pain and suffering and optimize QoL (6,8,9). It is a specialty medical care to maintain and improve the quality of care and QoL of persons suffering from serious illnesses regardless of age and diagnosis. Palliative care is initiated after diagnosis and coordinated by a multidisciplinary team to manage symptoms either with conventional treatment methods or complementary and alternative medicine (10,11). The purpose of palliative care is (I) to reduce disease symptoms, pain, and stress rather than to solely treat the underlying disease; and (II) to improve person and family satisfaction and well-being by addressing their physical, emotional, and spiritual needs (8,9,12,13). Palliative care is a highly organized and structured care system for delivering medical, physical, social, spiritual, and psychological supports regardless of disease prognosis (12-15). A hospital, an assisted living facility, a specialty clinic, an outpatient setting, or one’s home can all be settings for palliative care services (12).

It is critical to differentiate between palliative and hospice care. Palliative care is for patients with serious illness (12,13,16) and involves assessing and providing preventive or treatment strategies for managing symptoms (10,15). An individual’s medical decisions governs palliative care (10,15). Whereas, hospice care is for those who have exhausted all treatment options and have six months or less to live. Additionally, hospice care is more focused on end-of-life care to provide comfort to individuals and their family members and does not include curative treatments (12,17,18). The central theme of our article is non-hospice palliative care.

Addressing gaps and defining our objectives

The Western and developed countries have conducted most studies on palliative care. In comparison, research is limited on what constitutes palliative care for people living in low-resourced and developing countries, that incorporates their cultural and contextual preferences and needs. Additionally, limited research exits on reimbursement models that can support care for individuals and families needing palliative care services and on how a country’s existing healthcare system can integrate these financing models (19-21). For example, in the United States (U.S.) and many other parts of the globe, existing health infrastructure for palliative care is not present or integrated to provide services and reimbursement for palliative care. Our objective was to present an international perspective on the re-design of culturally sensitive palliative care for older adults aging in place in India, an ancient Eastern culturally and geographically diverse large country of a population of 1.4 billion comprising of 28 unique States and 8 Union Territories (UTs). We defined older adults as ages ≥45 years, similar to the definition of the Indian Ministry of Health supported Longitudinal Aging Study of India (2). The older adults in India who prefer to age in place need and prefer to receive palliative care services and support within their homes and communities (2). We first assessed the palliative care needs of the culturally diverse older adults in India. We then considered three key questions when re-designing palliative care for older adults aging in place in India: (I) what are the needs for palliative care for persons and their families? (II) Which palliative care domains are essential in assessing improvements in QoL? (III) What patient or person reported measures are important considerations for palliative care?

Assessing palliative care needs and challenges

Need and history of palliative care in India

According to the 2023 United Nations Population Fund report, in 2022, older adults comprised 10.5%, or 149 million of the population; this number is projected to increase to 20.8%, or nearly 347 million, by 2050 (5). Given multimorbidity and associated medical care needs increase with increasing age, there is a huge care need and burden for serious illness in India (1,2,4,22,23). Palliative care is an unmet need for older adults, with a prevalence of approximately 38 per 1,000 persons (18). Due to limited provisions of integrated health insurance schemes, less than 2% to 5% of India’s 1.4 billion population can get palliative care despite the growing need for such services (4,19-21). The 2015 report on the Quality of Death Index ranked India 67^th out of 80 countries (7,24,25). Additionally, multimorbidity and medical needs are directly related and increase with age (2,22,26). The growing older population in India, together with the poor overall Quality of Death Index, have primarily been the driving factors for the high need to establish palliative care centers in India (7,22,24-26). As such, it is paramount to develop policies supporting palliative care for older adults in India (5).

The first establishment of hospice care in India happened nearly four decades ago in Mumbai with the inauguration of Shanti Avedna Sadan. Later, the care establishment branched out to other urban and tourist cities like Delhi and Goa. Afterward, several other major cities such as Trivandrum, Chennai, Bangalore, Calicut, and Ahmedabad, established palliative care centers (14,23,27,28). The Pain and Palliative Care Society (PPCS) and the Neighbourhood Network in Palliative Care (NNPC) are major establishments in Kerala that support nearly two-thirds of the palliative care services (29-31). In 1994, guidance from the World Health Organization and the Government of India initiated the Indian Association of Palliative Care (IAPC) as a national forum with guidance to support and educate individuals, their families, and institutions regarding palliative care (25,32,33). There are over 250 palliative care organizations around major cities, but these centers fail to meet the quality standards of required care (34).

Palliative care is in the developing stage in India. The urban areas and a southern state have the most centers (35). Given India’s vast aging population, there is a significant need for palliative care, particularly for the provision of home-based palliative care services, which are more convenient and suitable for older adults (14,36). Home-based palliative care for chronic conditions like cancer has been in existence since 1996 (37,38). However, there needs to be a paradigm shift from disease-focused palliative care to palliative care focused on suffering reduction for any illness.

Home-based palliative care uses the comfort of a person’s familiar surroundings (30). Additionally, in India, aging in place is a culturally preferred choice by older adults and their extended families because of intergenerational family ties (39). Most older adults prefer to die at home surrounded by family members because of their strong connection to their home, family, and community (23,40). Culturally, it is common in India for adults and married children to care for their aging parents and for older adults to age in their homes (23,39,41). However, the migration of adult and married sons and daughters to cities and distant places for jobs has left older adults in rural areas alone in their homes and at risk for social isolation, calling for a greater need for community and local volunteers to step in to offer palliative care services.

Home and community-based palliative care services

Home-based care is the backbone of palliative care in India. Home-based means continued provision of palliative care for older adults who are home-bound and in their own homes. For this to happen, training is essential for the workforce to deliver care in collaboration with persons in need and their family caregivers until the end of the person’s terminal illness. Integration of community healthcare providers from community healthcare centers and neighborhood offices with trained volunteers who can take ownership from the local regions can improve the effectiveness of home-based services and can lead to broader reach, accessibility, and adoption. Several practice models of such collaborations have been effective in India of home-based palliative care. Two examples are the NNPC and the Trivandrum Institute of Palliative Sciences (TIPS) in the state of Kerala (4,29-31). These practices provide clinical services in partnership with community health workers and local volunteers to provide home health services, free treatment, and medicines to the poor or those who cannot afford them. At TIPS Pallium, India, home health visits are provided to older adults, the bedridden, those living in rural areas, and to those who may be unable to seek healthcare services due to geographical barriers (4,40,42-45). Additionally, TIPS works closely with the volunteer link centers to provide infrastructure for outpatient care (e.g., school, library, or community center) and to connect patients, communities, and outpatient care providers (4). Such operations are models for the rest of India to emulate for the provision and delivery of home and community-based palliative care services (43,44).

Interdisciplinary palliative care teams

Models of interdisciplinary palliative care teams and who comprises them have been operating in the Southern rural areas of India. The TIPS palliative care team in the inpatient and outpatient care settings comprises of physicians, nursing professionals, medical social workers, and physiotherapists (4). For the in-home care settings, trained palliative care teams can include a combination of health, community, or multipurpose officers, a nursing professional, and a community or local volunteer. All home team members do not need to be present for all home care visits. The specific team members for home care can be determined based on the needs of the persons/families and determined during home visits, which are coordinated and arranged by Accredited Social Health Activist (ASHA) workers (21). Pallium provides such services free of cost to nearly 75 percent of low-income families. Pallium has been running for over 20 years, and it oversees 137 palliative care centers across 28 States and 6 UTs in India (4). Additionally, Pallium also provides telehealth consultations around India, modeled in collaboration with the established Project Extension for Community Healthcare Outcomes (ECHO) program in the U.S. (4). This telehealth virtual teach-and-all-learn video-conferencing technology connects the specialists (the hub) and the patients with the community, delivers care, and manages patients regardless of where they live (4).

Traineeship of palliative care community workforce

The Ministry of Health and Family Welfare of India (MofHFW) has compiled a comprehensive training manual for the palliative care community health worker as part of the Ayushman Bharat Health scheme, to include wellness centres (21). The training manual has book chapters on the introduction to palliative care, types and domains of palliative care services (e.g., including care for the dying), family supports post the death of their loved ones (e.g., bereavement support), assessment and management of symptoms and pain, standard nursing procedures and the role of community health officer in the palliative care service delivery (21). Additionally, Pallium India provides online certifications for palliative care to physicians and nursing professionals (4). From 2003 to 2023, Pallium India has trained 5,891 participants, 510 doctors, and 433 nursing professionals (4). The MofHWF, in their palliative care services manual, has included care continuation for family members after the death of their loved ones so that they can cope with the grief and get back to their lives (21). Bereavement support has been a vital part of the cancer care continuum model for palliative care, a well-developed program that has long existed in India (4). However, there is a need for the provision of culturally sensitive bereavement support and services across all States and UTs.

Levels of palliative care and referrals

According to MofHFW palliative care is for any and all levels of care, within the existing healthcare centers and hospitals, and also for all areas, rural or urban (21). The palliative care delivery settings may include small centers of primary health or secondary-level hospitals or centers requiring a referral (21). Patients with more severe symptoms may need a referral to a palliative care specialist (21). The MofHFW suggests providing at-home culturally sensitive palliative care which considers the needs and preferences of persons and their families in the comfort of their homes as most optimal and cost-effective (21). Home-based palliative care avoids travel to long distances to seek palliative care while preserving the social structure of the society, i.e., the support of local friends and community; a significant component of the social fabric in India (21). We summarize the palliative care process (needs assessment, triage, and monitoring of outcomes) in Figure 1.

Figure 1 Care process to assess, triage palliative care services and supports and to track care outcomes for adults aging in place in India. Adapted from (21,33,42,46-49).

Financing palliative care in India

Health financing is essential in delivering palliative care in low- and middle-income countries (LMICs) such as India. Strategic palliative care partnerships with interprofessional team members and health economists can be crucial for developing comprehensive economic evaluations of palliative care in LMICs. The financial assessment can be shared with government ministries to allocate scarce resources and to re-design existing government-financed national health insurance schemes incorporating palliative care considerations for older adults (34). Currently, in India, limited public health insurance coverage and schemes are available for palliative care. Only a handful of health and care centers cover palliative care, mainly via the oncology care program, and as part of the government-provided Ayushman Bharat Health Insurance Yojna. This universal health insurance program launched in 2018 by the Prime Minister of India provides 500,000 Indian Rupees annually per household for secondary and tertiary care services. This national health policy scheme aims to provide health insurance coverage to nearly 55 crore poor and vulnerable based on their socioeconomic status and rural/urban residence (20). It is the most significant public health insurance provision in the world. Nevertheless, a limited focus, awareness, and need for palliative care in India means most of the palliative care is currently paid from out-of-pocket and only by those who can afford it. There is a greater need for coordinated and integrated palliative care in India by an interdisciplinary team of primary care providers, geriatricians, nursing professionals, and community health workers and for such interprofessional care delivery to be governmentally financed by the Ayushman Bharat Yojana and the MofHFW (21).

Challenges for palliative care in India

Each State in India has its own unique culture, norms, and regional language with multiple dialects. The States within India also differ in many other aspects, from literacy, spiritual practices to the number of religions practiced (e.g., Hinduism, Muslim, Sikhism, Jainism, Zoroastrianism, Christianity, among others) some coexist with casteism (a social classification assigned at birth that governs social hierarchy, socioeconomic status, and social and economic mobility) (2). Multilingualism is common in India, and multiple different spoken languages and dialects are widespread (50-52). As a result, linguistically, spiritually, and culturally concordant care can be a barrier to receiving appropriate palliative care in hospitals or institutes across regions (51). However, personalization of home-based palliative care based on needs, preferences, and domains of care, such as spiritual, social, emotional, cultural, of the persons, their families, and the communities they identify with can be beneficial (53). Furthermore, home-based palliative care services can be economical and cost-effective compared to hospital-based care or services provided by institutions (21,46,47). Engaged family members can serve as essential stakeholders in caring for their loved ones and to lessen the burden on the trained healthcare workforce (38,54). Additionally, expansion of home-based palliative care services to rural areas with limited centers can increase access to such services (42). In particular, the NNPC and the CanSupport project are existing models of home-based palliative care services in India (30,46).

Considerations for the re-design of palliative care outcomes and domains in India

Instruments to assess needs and adapt patient reported outcomes measures (PROMs) for palliative care

PROMs are an excellent resource to measure palliative care outcomes in India. The PROMS are measured using (I) the Integrated Palliative Care Outcome Scale (IPOS), (II) a refined Palliative Outcomes Scale (POS), (III) a Palliative Outcome Scale and Symptoms (POS/POS-S), and (IV) a Support Team Assessment Schedule (STAS) (55,56). The POS-S is a 10-item scale that measures the symptoms and the emotional, psychosocial, spiritual, and practical support needs of the persons. The scale has different versions for different conditions and languages (55-58). The STAS scale consists of 17 items that measure the person’s symptoms, anxiety levels of the family, communication quality with medical professionals and caregivers, and the requirements for supports (59). Some other questionnaires to measure patient-reported outcomes (PROs) include the McGill QoL questionnaire, QoL at the end-of-life questionnaire, quality of dying and death questionnaire, palliative care outcomes scale, and EuroQol (EQ-5D), a widely used standardized instrument to measure QoL. Most of these questionnaires assessed psychological symptoms, existential well-being, support, and physical symptoms (59). Based on the existing questionnaires, we summarize in Tables 1,2 parameters that can be adapted for PROMs in India for persons and their family members. The parameters we recommend list specific questions as qualitative or quantitative assessments to gauge the needs for palliative care for persons and their family members. Given that most of the existing questionnaires are in English for use by Western countries, the questions we suggest need to be validated using the local languages and must be adapted to fit the local culture, as previously suggested by Bhatnagar (60). We recommend using the regional languages and dialects for accurate assessment, with questionnaire validation, for culture-related elements.

Considerations for incorporating culturally sensitive palliative care domains

We assessed (I) a systematic review of 44 palliative care conceptual frameworks, (II) the U.S. National Institutes on Aging Health Disparities framework, and (III) the U.S. Minority Health and Health Disparities conceptual framework across (i) domains of influence, from behavioral health (e.g., behaviors, coping strategies), to physical and built envirnoment (e.g., personal environment), to sociocultural environment (e.g., socio-demographics, limited English proficiency, cultural identity), and to the health care system (e.g., coverage for health insurance, provision of health literacy, person/family preferences); and across (ii) levels of influence from individuals and interpersonal (e.g., family, patient-physician), to community and societal (e.g., policies and law, quality-of-care) (61-63). We adapt, integrate and summarize culturally appropriate palliative care domains for older adults aging in place in India in Figure 2 based on prior research (6,21,33,38,42,46-49,56,64-70). We provide considerations for culturally relevant domains and suggest inclusion of the following domains: social, behavioral, psychological, psychosocial (e.g., bereavement support to families), cultural, spiritual, health, medical, legal, and economic across multiple levels of influence (e.g., person/family, community, institutions, health systems) for achieving the desired palliative care outcomes. We suggest palliative care re-design considerations involve supports and services across several domains. At the person/family level these supports and services can be (I) resources and access to information via mobile or smart devices and phones (e.g., for the provision of management policies, access to holistic care within and across country, insurance and welfare options); (II) provision of coping and psychological skills (e.g., stability, control, and treatment), and emotional supports during emergency situations and during deteriorating conditions to mitigate ethos in medical procedures; (III) spiritual practices, formal, informal or personal supports for self, family, that may involve neighbors, communities, and institutions, including interfaith practices; (IV) cultural supports that take into consideration personal and family beliefs, practices, and rites; (V) bereavement supports and physical preparedness, having procedures in place for choice of final resting place, local laws and regulations upon passing of a love one; (VI) family supports such as sharing of generational beliefs, experiences and knowledge; and (VII) legal supports on property, fiancé, i.e., what family member gets what by religion, law, culture, personal choice or by will. Other domains can comprise of (VIII) oral health, nutrition (e.g., primary, complementary, and through multiple modalities, intravenous or oral), and (IX) medical needs (e.g., allopathic, complementary, and integrative).

Figure 2 Considerations for care domains for re-designing culturally sensitive palliative care for older adults aging in place in India based on types of supports and services needed for persons and their family members. Note: the social domain includes caregiver supports and services; the behavioral domain includes nutritional supports and services and management of physical symptoms; the psychological domain includes psychosocial and emotional supports and services; the cultural domain includes cultural, bereavement, and spiritual supports and services; and the linguistic and information supports and services. Adapted from (6,21,33,38,42,46-49,56,64-70).

In India, there is a lack of legal framework for palliative care. In 2018, the Supreme Court of India constitutionalized the right of a person to limit health and medical care for end-of-life. The Supreme Court also acknowledged the validity of living wills and advanced directives (71). However, the duty of physicians in India is still predominantly to save lives. The discourse has evolved to respecting the patient’s autonomy by the physician, similar to the ethical principals stated in the U.S. Belmont Report (71,72).

Discussion

We first assessed palliative care history, needs and challenges across India, and then assessed the interdisciplinary and novel workforce and palliative care teams, their education, and finally the financing structure for the provision and delivery of palliative care. We then adapted established palliative care conceptual frameworks to provide culturally sensitive re-design considerations for palliative care supports and services domains and outcome measures for older adults and their families who prefer to age in place in India.

We assessed the principles of MofHFW guidelines for the provision of palliative care in India. MofHFW recommends palliative care must be available to any individual with severe or life-limiting health-related illness to prevent and to offer relief for suffering. This care must be part of holistic care to improve the overall QoL and Quality of Death Index for persons and must provide supports to families from the loss of their loved ones (21). Additionally, palliative care can be highly beneficial early in the disease course continuum. Palliative care can be offered alongside curative treatments to increase the length of lifespan and to manage the complications or adverse outcomes of treatments from serious illnesses, e.g., cancer or dementia (22). With the changing demographics, rapid aging of the population, and increase multimorbidities with lack of availability of palliative care services equally across India, there remains a high need for palliative care.

The IAPC in India has worked towards creating a Palliative Medicine program, a well-recognized foundational professional education, program in India which involves specialized medical doctors.

Below we underscore the existing challenges to re-design. While palliative care education and training have made strides in India, challenges remain for palliative care in India. develop, deploy, and deliver home-based geriatric palliative care services in India (18). These include:

• Access to pain medications: the introduction of the Narcotic Drugs and Psychotropic Substances Act triggered a decrease in the use of opioid drugs in 1985. However, in 2014, the act relaxed its regulations to ensure better availability of these medications for pain management. Nevertheless, healthcare professionals are still reluctant to prescribe, and their training is limited (14,34,73,74).
• Limited resources and funding: the current government’s national health insurance schemes, especially in rural areas, lack funding to establish and provide palliative care, further limiting access to care for those living in rural India (43,46,73,75).
• Lack of awareness: most Indians have limited knowledge of the availability of palliative and rehabilitation care, which can cause delays in or altogether avert seeking such services (41,44,76).
• Communication: fragmented communication between healthcare professionals and individuals exists due to discomfort or lack of knowledge and can lead to delays in initiating palliative care services (14,48,75). One way to prevent this is to shift the focus from disease-specific care to person-centric care by involving persons, their families, and community members in the course of care. Additionally, the need for concordance in large families can delay requesting follow-up care, leading to fragmentation in the continuity of palliative care.
• Lack of quality research: limited data collection and reporting on quality and outcomes of palliative care limit improvements in existing palliative care (77).
• Rural India: rural India has compounded disadvantages due to poverty, illiteracy, and social structures such as the caste systems, which put rural people at a greater disadvantages for seeking knowledge on palliative care, its benefits and provisions, and where to seek palliative care (2,43). Additionally, the lack of proximity to hospitals in rural India limits seeking hospital-based palliative care and services. Lastly, hospital-based providers are not trained to deliver palliative care services in rural India.
• Provision, tracking and monitoring: there is a need to harness the technology, health infrastructure and digital revolution in India in partnerships with the private, public, entrepreneurial and governmental sectors so that palliative care services and outcomes can be tracked and monitored to identify areas with high risk and need and for palliative care resource allocation.
• Availability, affordability, and accessibility: India ranks 67^th out of 80 countries in the availability of palliative care (78). Moreover, palliative care in India is limited to a few places in the South, e.g., Kerala and Trivandrum, mainly via a few oncology centres (4,29-31).

Below we provide considerations for re-design improvements to sustain home-based palliative care services in culturally and geographically diverse India.

• Define specific roles for everyone involved in the care team. Involve community social workers such as ASHA in establishing palliative care services in collaboration with local volunteers (48). A multidisciplinary palliative care team comprising of nursing professionals, community members, local volunteers, and social health workers can be ideal for rural settings.
• Offer persons and families options to choose between home and hospital-based palliative care (48).
• Use a care process to assess, triage the delivery of palliative care services, supports, and track outcomes as summarized in Figure 1 (48,51,53,76).
• While palliative care pamphlet book for care providers is available in the national Hindi language as Prashamak Dekhbhaal or Upchaar (i.e., प्रशामक देखभाल or प्रशामक उपचार) (45), we suggest greater education, awareness and health literacy in the local and regional languages tailored to the culturally different States and UTs of India for broader reach, knowledge, accessibility, and acceptability. Additionally, to expand the reach of palliative care across India, inclusion of palliative care as part of the public health and medical care infrastructure, with a greater focus on national policy is crucial (45,79).
• While there are registries to track patient medications, longitudinal studies on palliative care needs, services, and outcomes are needed to track and monitor trends and progress in the delivery and quality of care over time (4).
• Given the rise of 3G, 4G, 5G cellular telecommunications, improvements in the broadband services, intelligent mobile devices, and fiber optic cables, harnessing and combining the technology revolution with the large, technologically savvy younger workforce can empower the provision and deployment of palliative care across India.

In summary, palliative care in India must be carefully and systematically re-designed, culturally and linguistically tailored, and community-focused, incorporating the customs, culture and traditions of India, with persons, their families, and community members as critical and vital stakeholders in the design process. Incorporation of person and family preferences must be a key consideration in the re-design process. Additionally, education of family members must be a critical tenant of the program, given the Indian culture values ‘the family’ as a core unit. Moreover, involving the youth and grandchildren to form dyads of families and healthcare teams as part of the palliative care team can be a win-win collaboration.

Given the growth of the telecommunications capacity, improvements in broadband services, and wide adoption and use of mobile devices, technology can be an essential tool for palliative care accessibility. Despite these advances, there remains a greater need for affordability and availability of these services in rural settings. Providing culturally cognizant palliative care in different languages and incorporating the preferences of families and caregivers can improve the acceptability of palliative care services across India.

Finally, for transforming palliative care within India, we suggest the integration of social supports and services at all levels, from the neighborhood, community, local, regional, and national levels, in partnerships with interprofessional health and educational teams and the government of India. Greater awareness and education of palliative care services by providers and policymakers, together with the reform of the Ayushman Bharat Health insurance scheme, can expand and prioritize the provisions and resource allocation for palliative care services for the older populations in need of such services. Our suggested considerations broadly apply to older adults in other LMIC’s and globally who prefer to age in place and are in need of culturally tailored palliative care supports and services. The domains we highlight for palliative care needs may be particularly transportable to South Asian Indians who migrate to other countries, given that culture may not necessarily change post-migration.

Limitations

We acknowledge several limitations. We did not evaluate any primary data. Our proposed needs assessment questions have not been validated in the local or national language. Additionally, we did not involve any older persons, family or community members, or volunteers in the needs assessment and/or to re-design considerations of palliative care. Nevertheless, we recognize, and underscore involving and engaging older adults early in the re-design process to increase the adoption and quality of palliative care services. Our review article is based only on culturally diverse India. Therefore, our considerations about palliative care re-design may or may not fully generalize to other countries.

Conclusions

We suggest incorporating cultural norms, community needs, traditions, personal preferences, language, societal and social support systems, educational and health institutions, and government provided guidelines in re-designing palliative care within India. Framing palliative care as an essential preventive care and widening the scope of palliative care financing to all States and UTs would increase access to palliative care across geographically and culturally diverse India. A holistic palliative care approach is essential to incorporate culturally sensitive care domains that impacts not only older adults who prefer to age in place but also their families and communities. Future studies can focus on conducting qualitative and quantitative assessments of the palliative care needs of persons, their families, and communities, to further inform and advance practice and policy development. There remains a need to assess the quality of care, provide equitable access to information and resources, including legal information, and to establish long-term sustainable palliative care teams to expand access to palliative care. Additional future directions can involve validation of palliative care assessment tools by persons, their families, and community members to inform the quality-of-care domains, and establish long-term sustainable teams and government schemes for wider reach among rural areas. Finally, examining how established palliative care programs and schemes for older adults who prefer to age and die in place, are designed and deployed in other countries, can provide important lessons for practice, delivery, and policy.

Acknowledgments

This article is dedicated to the loving memory of Mrs. Pushpalata Zanwar, age 74 years with multiple chronic conditions and mother of P.P.Z. who preferred to age in her home and died at her home in rural India during the COVID-19 pandemic. We thank the Health Economics Alzheimer’s Disease Center (HEADS) for bringing co-authors P.P.Z. and L.V.E. together. We also thank the International Health Economics Association’s (iHEA) Economics of Palliative and End-of-Life Care Special Interest Group for bringing together an international team of health economists to develop a special series on “Value of Palliative Care”.

Funding: This work was partly supported by the U.S. National Institutes of Health/National Institutes on Aging (T32AG066598 to L.V.E.).

Footnote

Provenance and Peer Review: This article was commissioned by the editorial office, Annals of Palliative Medicine for the series “Value of Palliative Care”. The article has undergone external peer review.

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-527/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-23-527/coif). The series “Value of Palliative Care” was commissioned by the editorial office without any funding or sponsorship. P.P.Z. served as the unpaid Guest Editor of the series. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work and ensure that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict provision that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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