Palliative care aims to enhance the quality of life for patients and their families, irrespective of age or illness stage.
In the 1990s, terminally ill patients in India were often discharged from hospital, leaving families with the difficult task of caring for their loved ones. (Shutterstock)
Two Indian states, Kerala and Telangana, have received praise from the World Health Organization (WHO) for their exemplary palliative care model — a specialised healthcare approach focusing on alleviating symptoms and stress related to serious illnesses.
The WHO’s report, titled “Expanding Availability and Access to Palliative Care”, presented by palliative care experts from Southeast Asia, specifically lauds Kerala for its community-driven palliative care initiatives, and Telangana for the collaborative efforts between the state government and civil society organisations.
Palliative care aims to enhance the quality of life for patients and their families, irrespective of age or illness stage. It can be provided alongside curative or life-prolonging treatments.
In the 1990s, terminally ill patients in India were frequently discharged, leaving families with the challenging task of caring for their loved ones. With advancements in health determinants and medicine, life expectancy increased, and the elderly population grew. Palliative care, initially centred on cancer patients, expanded to include other chronic illnesses.
In 2011, 29 million people needed palliative care, with the majority being adults above 15 and 69 percent over 60 years.
According to the WHO, palliative care policies must be tailored to local needs, considering both clinical and cultural aspects, and should be practical, feasible, and acceptable for successful implementation.
The WHO report states, “National and subnational-level policies can also be crucial in expanding palliative care, such as that seen in Kerala state in India. Policies should identify palliative care as the responsibility of primary care clinicians, as well as specialists in many disciplines. The bottom-up approach in Kerala, India, where palliative care programmes have been integrated with community participation demonstrates a highly successful model.”
The neighbourhood network in palliative care, a model from Kerala, has proven effective. Training mid-level professionals, such as palliative care assistants, has facilitated access to home-based palliative care. Volunteerism has played a significant role, adapting to local needs.
“Volunteerism is a powerful way to increase access to palliative care, the means to ensure it varies from place to place. Technological innovations facilitate delivery of services. Use of smartphones for teleconsultation is a simple but widely used example. This can be leveraged further,” the WHO report said.
Kerala has been acknowledged as a successful model, not only in India but in the entire developing world, through its pioneering work in community-based palliative care.
The palliative care movement in Kerala began with the Pain and Palliative Care Society in Kerala and grew rapidly with the formation of the Neighborhood Networks in Palliative Care (NNPCs), providing home-based palliative care.
“The Kerala Model places a strong emphasis on community participation and volunteerism, integrated with the primary healthcare system, especially through dedicated nurses under the overall leadership of local governments,” said the report.
Kerala introduced a comprehensive Palliative Care Policy in 2008, making it the first state in India to do so. The state has effectively implemented this policy, establishing a model of community-based palliative care that is widely regarded as the best in the country. Drawing from over a decade of experience, a new Palliative Care Policy was issued in 2019.
The goal of the policy is to ensure that every person in Kerala has access to effective palliative care services of good quality, with a focus on community-supported home-based care without exposing them to financial, social, or personal hardships.
In addition to praising the two states, the WHO acknowledges that in India, the recognition of palliative care as a medical sub-speciality by the medical council led to the development of a specific MD curriculum.
The Kerala model of palliative care adopts a multi-tiered approach, involving local self-governments, health professionals, and a vast network of trained volunteers. The integration of palliative care across primary, secondary, and tertiary levels, along with collaboration with community-based organisations, reflects a comprehensive and inclusive strategy for delivering effective palliative care services throughout the state.
Primary level palliative care has been implemented by all 1,064 Panchayath Raj Institutions in Kerala through respective primary health institutions.
“There are structured home visits conducted by a team led by a trained community nurse, supported by ASHA workers, LSG members, PHC field staff, and volunteers. The Medical Officer of the health institution oversees the project, staying informed about each patient through the community nurse,” said District Medical Officer (DMO) of Kerala to South First.
Secondary level palliative care is implemented at two levels, involving major hospitals of districts (taluk, general, and district hospitals) with the National Heath Mission’s support. “This level of palliative care provides specialist care for patients referred from primary level programmes, and offers inpatient and outpatient services,” the DMO said.
The long-term care programmes in community health centres address specialist care for non-communicable diseases, mental health issues, and old age-related concerns.
Tertiary level palliative care are 15 tertiary units in the state focused on training for professionals, students, and volunteers. “These implement secondary level programmes and are responsible for coordinating, monitoring, and improving the quality of primary and secondary level units in the district,” explained the DMO.
And the most important aspect is that over 400 community-based organisations actively provide home-based palliative care in collaboration with the government’s palliative care programme. “More than 50,000 trained volunteers participate in palliative care activities, working in association with the government and NGOs,” the DMO said.
In a 2021 study it was found that palliative care units in Kerala provide comprehensive care to patients, addressing physical, psychological, spiritual, and economic aspects. Services are offered free of cost through home care units, significantly reducing overall treatment costs for patients and families. All studied palliative care units reported being able to cover operational expenses through various funding sources.
Micro-donations from active community participation form a major income source, highlighting the economic self-sufficiency of the model. Innovative approaches, such as social entrepreneurship, contribute to funding, ensuring financial security and overall sustainability.
Volunteers play a crucial role in patient care and support services within palliative care units. They actively engage in fundraising and contribute to the management and service delivery of palliative care alongside the multidisciplinary team. Volunteers are considered the backbone of the Kerala model and their enthusiastic engagement positively impacts the sustainability of palliative care provision.
Praising Telangana, the WHO notes that in the Indian state, the government and civil service organisations (CSOs) have collaborated successfully to enhance palliative care services. This collaboration exemplifies a positive partnership between the government and CSOs.
“The planning and implementation of palliative care services in Telangana has been remarkable in that it has been achieved through the joint efforts of the government and a CSO. It can serve as a useful model for others working in this area,” said the WHO report.
The approach taken in Telangana can serve as a great example for others involved in similar efforts.
The report highlights that as a parallel activity to fortify the palliative care initiative, the CSO took up the task of building the capacity and raising awareness among district health officials, including accredited social health activists, auxiliary nurse midwives, staff nurses, and medical officers, at all levels of the public health system. This facilitated the identification and referral of patients to the nearest palliative care unit.
In Telangana, a successful palliative care initiative involved financial assistance and Mobile Home Care Units (MHCU) in the form of mobile vans, allowing healthcare workers to visit terminally ill patients at their homes.
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