The Essence of Palliative Care: Lessons from a 30-Year Journey in Kerala

Categories: Care and Community Engagement.

Three decades ago, palliative care initiatives were launched in Kerala. According to the World Health Organization, palliative care is a holistic approach designed to enhance the quality of life for patients and their families confronting physical, psychosocial, and spiritual challenges arising from life-threatening illnesses.

While the formalization of palliative care as a specialized field in modern healthcare is a relatively recent development, the practice of compassionately supporting and comforting individuals dealing with the distress experienced when death becomes imminent due to incurable diseases is not bound by time.

At its core, palliative care embodies the innate human desire to provide comfort, alleviate pain, and extend emotional support to fellow sufferers.

Palliative care should be understood as a crucial component of public health, serving as a vital support system for individuals and their families facing serious illnesses.


Characterized by a holistic, patient-centered approach extending beyond conventional medical treatment, palliative care practices aim to enhance patients’ quality of life by alleviating pain and other physical difficulties. However, the role of palliative care goes beyond these aspects. What sets palliative care apart is its focus on addressing the emotional, social, and spiritual dimensions of the illness experience.

Scientific efforts to ensure a dignified and peaceful death also constitute an integral part of palliative care. Factors such as a compassionate and rights-based approach, equal consideration and participation, open and honest communication, and ethical decision-making play pivotal roles in determining the quality of palliative care activities.

 Dr. Rajagopal (Pallium India) and Dr. Suresh Kumar, Founder Director of the Institute of Palliative Medicine, initiated palliative care activities through an outpatient unit at Kozhikode Medical College.

Although the British hospice model served as a significant influence, the pioneers of palliative care soon realized that the institution-centric model did not align with the socio-cultural makeup of Kerala. Experiments stemming from this realization laid the groundwork for an alternative model proposed by Kerala known as the Neighborhood Network in Palliative Care (NNPC) or ‘Swathanamekan Ayalkannikal’.

NNPC envisioned that the challenges faced by bedridden patients exceeded physical issues and required solutions that extended beyond the purview of doctors and nurses, emphasizing a social responsibility.

In the early stages of palliative care, volunteers played a limited role in assisting medical professionals. However, as NNPC evolved, volunteers assumed a central role in planning and executing palliative activities in a decentralized manner.

In 2008, the state government introduced a palliative care policy for the first time in India, signalling Kerala’s commitment to palliative care.

Subsequent to the implementation of this policy, initiatives led by the National Rural Health Mission facilitated the widespread adoption of palliative care by local self-government bodies. Concurrently, the state-level campaign, ‘Njangal Und Koode’ (We are with you!) campaign, organized a new public movement in the field of palliative care.

Presently, there are approximately 1700 palliative care units in Kerala.

Palliative care is actively promoted in the non-governmental sector by various entities, including social organizations, religious groups, and political parties. Kerala has largely succeeded in implementing the concept of total palliative care in the government sector, guided by the steps outlined in the palliative care policy.

It is noteworthy that, despite variations in the quality and working methods of palliative care units in Kerala, the state has presented a distinctive independent care model rooted in public health principles, emphasizing social participation and compassion.

The claim that the growth of palliative care in Kerala is an isolated effort is not factual. An example of this is the formation of a global network called Public Health Palliative Care International. Following the model of Kerala, the said network has led to the initiation of community-based palliative activities in many parts of the world. The main mission of the network leaders is to spread the message globally that palliative care is not just a health issue but a social responsibility and a vital component of public health.

Kerala’s unparalleled example of bringing quality care to inpatients at their doorsteps has attracted attention on a global basis, but the reality is that Kerala still has a long way to go in the field of palliative care.

Less than 10 percent of people in any society die suddenly. More than 90% will need palliative care at the end of life due to terminal illness or age-related health problems. The bottom line is that the skills and knowledge of bedridden care is an essential life skill for anyone.

Currently, the training programs organized by most palliative care units in Kerala focus on the limited objective of generating volunteers for their respective clinics. Palliative initiatives need to focus on the broader goal of having as many people in the community as possible to provide basic care to bedridden patients in their own homes or neighborhoods.

Another concept that makes this task imperative is the “95% rule”. Palliative care team members, including community volunteers, spend less than 5% of their time with any patient in their care. Most of a patient’s time (more than 95%) he is alone in his own bed or in the vicinity of family members, relatives, neighbors or friends.

Like many other societies, Kerala is far behind in terms of “death literacy”. Palliative care takes the quality of death as seriously as it does of life. But achieving this goal in societies lagging behind in death literacy will be a major challenge.

Many traditions related to death exist in any society. These are commonly known as “death systems”. Religion or social beliefs may be the driving forces behind this. How a person approaches death in a society is often determined by the prevailing systems of death.

Despite the widespread presence of palliative care units in Kerala, many people end up alone in the intensive care units of hospitals at the point of death and suffer in vain. This phenomenon is a manifestation of the death system prevailing in the society. Palliative care practitioners must be able to deeply study and positively influence such conditions.

It is also a matter to be taken seriously that there are no platforms in Kerala where people can share their thoughts, hopes and concerns related to their own death. Having such conversations with the dying is difficult. That’s why these conversations are essential and should start early.

Initiatives like the Death Cafe run by organizations like the Institute of Palliative Medicine are efforts to popularize such conversations. Palliative care must undertake the task of providing effective platforms for conversations about death as a necessity of life.

Another area that needs to be actively considered by palliative care workers in Kerala is grief and bereavement after the death of a loved one. There is a myth that such challenges are unique to the Western world, where family-neighborhood ties are not strong. The Covid-19 pandemic has disproved the notion that intimate relationships and family ties naturally address the grief and loss that death leaves behind.

In the second wave of Covid-19, many deaths were reported in Kerala, as in many parts of the world. Numerous individuals succumbed to illness in hospitals. Post-mortem rites were performed by concerned health workers following protocols.

The families of the deceased were unable to see the bodies or perform the last rites, causing significant mental stress. A focus group discussion was then conducted with a select few who had lost their loved ones during and before the Covid-19 pandemic to understand the pain and bereavement that death creates. This was an eye-opener.

From the discussion, it was realized that our intervention in such cases is often superficial. Following this realization, a project called the ‘Bereavement Companionship Program’ has been initiated. This is a joint venture of the Institute of Palliative Medicine, a collaborating center of the World Health Organization, and the Death Literacy Institute in Australia.

This training program aims to scientifically approach the complex emotions and thoughts arising from the bereavement experience of the bereaved and to empower individuals to ensure compassionate closeness to them. Palliative care units in Kerala can effectively carry out the responsibility of organizing similar training programs on a large scale.

Every year, on January 15, Kerala observes Community Palliative Care Day. At this juncture, drawing insights from 30 years of work, there are several agendas that palliative care workers in Kerala need to urgently focus on.

Recognizing compassionate and dignified care in illness and at the end of life as a fundamental human right, creating models of rights-based palliative care becomes an important task. Palliative care workers should undertake the necessary activities in the days to come to recognize and address the care of the bedridden as a basic life skill. Interventions aimed at increasing death literacy and constructively influencing existing death systems in the community should be prominent on the active agendas of palliative care units.

In the words of the former First Lady of the United States, Rosalyn Carter, ‘There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.’

Carter’s words underscore the universal reality that the majority of us will, at some point in our lives, engage with palliative care, emphasizing the importance of fostering a compassionate and supportive care culture

Saif Mohammed 
Former State Programme Manager, Government Palliatieve Care programme, Kerala, India 
Faculty member , Institute of Palliative Medicine, WHO CC 
Former CEO , Mission Better Tomorrow



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