Keralam’s experience offers an example of how such a model can work
As World Hospice and Palliative Care Day is observed on October 10, experts say India needs to move beyond a hospital-centric approach and focus on bringing palliative care closer to patients’ homes. The state’s palliative-care initiatives began with voluntary efforts in 1993, and Kerala became the first Indian state to announce a comprehensive palliative-care policy in 2008. Kerala currently reports 1,141 primary palliative-care units covering gram panchayats, municipalities and corporations. The state also has 113 secondary-level units in major hospitals and 231 units at community health centres. More than 500 organisations in the NGO and community sectors provide home-based medical and nursing services. The state has also been working to integrate government institutions, voluntary organisations and community volunteers through its Kerala Care palliative-care grid, launched in March 2025. The grid currently includes more than 1,300 government institutions and more than 1,000 voluntary organisations, with information on over 158,000 bedridden patients, according to the Kerala Health Department. In 2024–25, Kerala recorded 9,77,879 patients visited at home for palliative care, while Uttar Pradesh recorded 33,832. Kerala also recorded 13,47,566 patients availing palliative OPD services, compared with 3,68,834 in Uttar Pradesh. UP has the framework, but reach remains the challenge Uttar Pradesh began implementing the National Programme for Palliative Care in 2016–17. As of October 2025, government data showed functional NPPC services in 23 districts of Uttar Pradesh, compared with all 14 districts of Kerala.
Shukla, effective pain management therefore begins with careful assessment and listening rather than simply responding to a pain score. Shukla said palliative care therefore needs to become more closely integrated with primary healthcare and community-level services. The appropriate goal of treatment, therefore, cannot be decided by a pain score alone.
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Pain management, according to geriatric and palliative-care specialist Dr Abhishek Shukla from Aastha Centre of Geriatric Medicine, Palliative care & Hospice cannot be reduced to prescribing medicines or bringing down a number on a pain scale. The more important question, he said, is what the pain is preventing the patient from doing, whether it is sleeping through the night, walking to the dining room, eating comfortably, spending time with family or carrying out a simple activity that gives meaning to the day. According to Dr. Shukla said palliative-care teams need to look beyond the intensity of pain and understand its impact on a patient’s everyday life. The objective, he said, is not simply to eliminate a number on a pain scale but to help the patient achieve the greatest possible comfort and function, in keeping with their medical condition and personal priorities. Shukla said, need to be heard and respected. Shukla said, is where the next phase of palliative-care development needs to focus. Shukla said the emphasis should ultimately be on creating a connected chain of care rather than isolated palliative-care facilities. Shukla said families need to understand not only how to administer medicines but also how to recognise changes in pain, behaviour, appetite, sleep and mobility and when to seek professional help.
Lucknow: For millions of Indians living with cancer, advanced heart disease, neurological disorders and age-related illnesses, the biggest challenge is often not treatment itself but access to comfort, pain relief and supportive care. Kerala ’s experience offers an example of how such a model can work. Over the last three decades, the state has developed a vast community-based palliative care network that combines government institutions, local bodies, volunteers and healthcare professionals. The system relies heavily on home visits, allowing bedridden and seriously ill patients to receive support without repeatedly travelling to hospitals. This distinction becomes particularly important among older adults, many of whom live with multiple chronic illnesses, frailty, dementia or communication difficulties. In such cases, pain may not always be expressed as a verbal complaint. Agitation, withdrawal, disturbed sleep, loss of appetite, reduced mobility or a change in behaviour may be the only indication that a person is suffering. Pain is more than a number Patients with similar illnesses can experience pain very differently. Previous experiences, anxiety, fear, emotional state, social circumstances and expectations can all influence how pain is perceived and expressed. Dr. The underlying cause also needs to be established. Pain could be related to the disease itself, nerve involvement, inflammation, pressure, an injury, constipation, immobility or another treatable condition. Treatment can then be individualised, with options ranging from appropriate analgesic medicines to physiotherapy, positioning, mobility interventions, psychological support, relaxation techniques and other non-pharmacological measures. Opioids, when clinically indicated, can play an important role in managing moderate to severe pain, particularly in advanced illness. But Dr. Shukla stressed that their use needs appropriate assessment, careful prescribing and regular monitoring. At the same time, unnecessary fear of such medicines should not become a barrier to legitimate pain relief. For some patients, being pain-free may be the primary concern. For others, remaining sufficiently alert to communicate with family may be more important. Someone else may place greater value on being able to walk independently or eat without discomfort. These preferences, Dr. When pain affects dignity Persistent, uncontrolled pain can gradually take away a person’s independence. It can affect eating, sleeping, mobility and communication and can make a person dependent on others when they could otherwise remain engaged with their families and surroundings. For someone with advanced illness, the most meaningful outcome of treatment may sometimes be very simple, being able to sit comfortably with family, attend a family occasion, sleep peacefully or have a conversation without being overwhelmed by pain. This is where palliative care assumes a role beyond medicines. Dr. Abhishek Shukla who is pursuing his PhD in Palliative Care from University of Maryland, USA, believes that comfort should not be treated as a lesser medical goal. For many patients, particularly those with advanced illness, maintaining comfort and dignity may be more important than pursuing another intervention at all costs. But ensuring that such care reaches patients is a larger health-system challenge. And this is where the experience of Kerala offers an important lesson for Uttar Pradesh . Kerala takes palliative care to the community Kerala has spent more than three decades developing palliative care as a community-based service. The programme subsequently evolved through the involvement of healthcare institutions and local self-government bodies. The scale of the network is significant. The distinguishing feature of the Kerala model is that palliative care does not stop at the hospital. Bedridden patients are connected with trained volunteers in their neighbourhoods, while nurses and healthcare teams provide home-based care. Research on Kerala’s programme has also found that home visits are central to how both government and non-government palliative-care providers deliver services. For Dr. Shukla, this is an important distinction. A palliative-care service is of limited value to a patient who is too frail or bedridden to travel to a hospital unless the system has a mechanism to take care to that person’s home. The numbers show the gap The contrast between Kerala and Uttar Pradesh becomes particularly visible in government data on home-based services. The figures should not be interpreted as a simple ranking of the two healthcare systems. But the data does point to a substantial difference in the scale of home-based palliative-care delivery. For a bedridden patient in a rural part of Uttar Pradesh, travelling repeatedly to a district hospital may not be realistic. In such cases, the question is not simply whether a palliative-care facility exists, but whether the healthcare system can reach the patient. That, Dr. The state health department lists availability and accessibility of palliative services, development of facilities at different levels of the healthcare system and greater participation of communities among the programme’s objectives. The challenge for Uttar Pradesh, however, is considerably larger in scale. The state has a vast geographical spread and a large rural and semi-urban population. A hospital-centred model alone cannot easily provide continuous support to every patient living with advanced illness, particularly those who are elderly, frail or bedridden. Dr. The objective, he explained, should not be to create an entirely separate system that patients have to discover when they become seriously ill. Instead, palliative-care skills should increasingly become part of routine healthcare, allowing frontline workers to recognise symptoms, support families and refer patients requiring specialist intervention. From hospitals to homes This approach is also consistent with the broader direction of India’s palliative-care programme. Community-level health workers can play an important role in identifying patients who need palliative support, conducting home visits and maintaining continuity of care, while more complex cases can be referred to higher levels of the health system. For Uttar Pradesh, such a model could be particularly important. The state does not necessarily have to reproduce Kerala’s system exactly. Its geography, population and healthcare infrastructure are different. But the principles behind Kerala’s experience — primary-care integration, trained nurses, community participation, local-government involvement and home-based services, could provide useful lessons. Dr. Families are part of the system too Much of palliative care takes place outside hospitals. Family members are often responsible for administering medicines, helping patients move, assisting with feeding, managing wounds and providing emotional support between professional visits. This makes caregiver education an important part of palliative care. Dr. Kerala’s experience also highlights the value of community participation. Its palliative-care system has involved local governments, voluntary organisations, trained nurses and community volunteers over several decades. The state currently estimates that more than one lakh volunteers are active in palliative-care activities. Such community involvement could be particularly valuable in Uttar Pradesh, where the sheer size of the population makes it difficult for specialist teams alone to provide continuous care. Palliative care is not about giving up Another challenge is changing the perception that palliative care begins only after all other treatment has stopped. Dr. Shukla stressed that palliative care should not be viewed as an indication that medical treatment has ended. It can be provided alongside disease-directed treatment, depending on the patient’s needs. For people living with cancer, advanced heart or lung disease, neurological disorders, frailty and multiple chronic illnesses, palliative care can help manage symptoms while other treatments continue. Its purpose is not simply to treat pain. It is to address the physical, psychological, social and spiritual dimensions of serious illness. The patient has to remain at the centre Effective palliative care is rarely the responsibility of one professional. Physicians, nurses, pharmacists, physiotherapists, psychologists, counsellors, social workers, caregivers and family members all have a role. Shukla emphasised that the patient’s own priorities must remain at the centre of decision-making. A patient may prioritise pain relief. Another may value alertness. Someone else may want to remain mobile or continue eating independently for as long as possible. It has to be decided in the context of the person’s life, priorities and dignity. The bigger question is access The debate over palliative care ultimately goes beyond the availability of medicines or the number of hospital-based units. It is about whether a person living with serious illness can receive relief from suffering wherever that person happens to live. Kerala’s experience shows what can happen when palliative care becomes part of the community rather than remaining confined to hospitals. Its extensive network of primary-care units, home visits, volunteers, local governments and voluntary organisations offers one possible direction for other states. For Uttar Pradesh, the task is not simply to increase the number of facilities. It is to strengthen the last-mile connection between those facilities and the patient. For someone who cannot travel, the most meaningful healthcare intervention may be a trained nurse arriving at the doorstep. For a family caring for a bedridden patient, it may be guidance on managing pain. For an older person with advanced illness, it may simply mean being able to sleep comfortably, eat without distress, speak with family or remain at home surrounded by familiar people. Modern medicine cannot always cure disease. Shukla points out, there is almost always something that can be done to relieve suffering, preserve dignity and improve the quality of the life that remains. And perhaps that is the real measure of palliative care, not merely how many services a health system has created, but how close those services can come to the person who needs them most. Download the TOI App.