Palliative care often labours under a damaging misconception. It is assumed that the medical discipline refers only to end-of-life care for terminally-ill or elderly patients. However, the scope is much larger, say doctors, equating it with supportive care, from diagnosis through treatment.
“Palliative care is frequently viewed as a sign that ‘nothing more can be done,’ whereas in reality, it should be introduced early in the disease trajectory, alongside active treatment,” says Dr Sachin Trivedi, director of medical oncology, HCG ICS Khubchandani Cancer Centre, Colaba, Mumbai. He further explains that end-of-life care is only one component of palliative care. The discipline in fact “focuses on symptom control, emotional well-being, treatment tolerance, and quality of life, irrespective of prognosis,” he adds.
According to Dr Trivedi, a culture of palliative care in the Indian healthcare system is “absolutely critical”. He says that India is facing a convergence of rising cancer incidence, increasing chronic disease, and an ageing population. “Without a strong supportive care culture, we risk overtreatment, unnecessary ICU admissions, poor symptom control, and catastrophic out-of-pocket expenses for families,” he explains.
A report released by the Indian Association of Palliative Care (IAPC) this year revealed that only 4% of India’s population has access to palliative care. The paper, titled From Paper to Patients: Why India Must Put Palliative Care Policies to Practice, also recognises that India has since 2012 had a policy with provisions for palliative care, but its impact has been less than desirable. The National Programme for Palliative Care (NPPC, 2012), as well as the National Health Policy (2017) which recognises palliative care, have adequate provisions on paper, but reflect uneven, incomplete, and inconsistent implementation, according to the IAPC.
Dr Sunny Jain, senior consultant and head of department, medical oncology, Accord Super Specialty Hospital, Faridabad, echoes the importance of integrating palliative care more significantly in the healthcare system. “Palliative care is most prominently required in non-communicable diseases like in oncology, advanced organ failure (heart failure, COPD, chronic kidney and liver disease), and neurology (stroke, dementia, motor neuron disease), with a growing recognition in paediatrics,” he explains.
As per the World Health Organization (WHO), says Dr Jain, it is estimated that around one-third of adults needing palliative care have cancer, while cardiovascular and other chronic diseases account for an even larger share, “and Indian data mirror this pattern”. “In India, nearly 7-10 million people are estimated to need palliative care at any time, largely concentrated in these specialties, which is why major oncology and tertiary centres are usually the first to develop formal services,” he adds.
Building on the lack of adoption of this discipline in the country, Dr Jain says, “Accessibility is highly uneven: states such as Kerala, Delhi, Chandigarh, Haryana and a few others provide statewide geographical access within 30 minutes for many residents, while large parts of central and eastern India have sparse or no services, and rural populations are most disadvantaged.”
Need-based, not age-based
“Palliative care is need-based, not age-based,” says Dr Jain. “It is appropriate at any age when a person has a serious, life-limiting or life-threatening illness that causes significant symptom burden or psychosocial distress.” He says among adults these commonly include advanced cancers, severe heart or lung disease, chronic kidney or liver failure, progressive neurological conditions such as dementia, Parkinson’s disease and motor neuron disease, complex neuron disease in old age, and congenital anomalies, severe cerebral palsy, advanced malignancies and rare genetic or metabolic disorders in children. “There are no strict exceptions – palliative care can be started at diagnosis and continue alongside curative or disease modifying treatment, and it is also appropriate for acute catastrophic events (such as major trauma or stroke) where prognosis is poor and symptom control and family support are paramount,” he elaborates.
Dr Trivedi adds, “Supportive care may be appropriate for a young adult undergoing intensive chemotherapy, a child with a life-limiting condition, or an elderly patient with heart failure. In my experience, the only real exception is when referral is delayed due to physician or family misconceptions, often to the patient’s detriment.” “Supportive care focuses on addressing pain, breathlessness, fatigue, nausea, and other symptoms, psychological and emotional distress, nutritional and functional decline, communication around treatment goals and expectations, as well as support for caregivers and families,” he explains.
Limited access
Supportive care is not just humane, it is cost-effective, says Dr Trivedi. Early integration has been shown to reduce hospital stays, emergency visits, and futile interventions, making it one of the most value-driven aspects of modern medicine. “It can be delivered through outpatient clinics, home-based services, hospital teams, or hospices, depending on patient needs,” he adds.
Speaking of how accessible palliative care is, Dr Trivedi opines, “Access remains limited, uneven, and largely restricted to urban tertiary centres. Even where services exist, referrals are often made too late, reinforcing the false belief that supportive care equals terminal care.” He adds, “There is also a shortage of trained professionals, particularly outside metros. However, encouragingly, several states have begun investing in training programs and hospital-based units.”
As per Dr Trivedi, the costs for palliative care can vary based on complexity of the diagnosis and location of the patient. On average, he says, outpatient consultations range from Rs 1,000 to Rs 5,000; home-based care visits cost from Rs 2,000 to Rs 10,000; and monthly comprehensive care plans range from Rs 7,000 to Rs 40,000. However, he adds, “When compared to repeated hospital admissions or ICU stays, supportive care is highly affordable and often cost-saving.”
Dr Jain of Accord Super Specialty Hospital further expounds, “In private or corporate hospital settings in metros, a comprehensive palliative care plan that includes regular outpatient reviews, occasional admissions for symptom crises, counselling and home care support can range from modest monthly fees for clinic-only models to substantially higher costs when frequent in-patient stays and intensive home nursing are involved.”
Wider awareness imperative
India must formally recognise supportive care as a core medical specialty, not an optional add-on, say doctors. “Early referral should be standard, insurance coverage must expand beyond terminal care, and training should be scaled across medical colleges,” says Dr Trivedi. Policy-level intervention is key, according to Dr Trivedi. He says that these policies could include mandatory supportive care units in cancer centres, early referral triggers built into oncology and chronic disease protocols, insurance coverage for outpatient as well as home-based supportive care, among other measures.
According to Dr Jain, too, to make palliative care more accessible, awareness needs to increase, and the discipline needs to penetrate further into the healthcare system. “Integrate palliative care into primary care. Every health and wellness centre should have at least one staff member trained in supportive care.”
He further opines that secure opioid availability with safeguards should be ensured, by streamlining procurement and dispensing of oral morphine and other drugs; NGO-funded community based homecare models; inclusion of palliative care in insurance and health benefits packages; and perhaps most importantly, “Embed training into health education – make basic palliative care competencies mandatory in MBBS, nursing and allied health curricula, and scale short courses and distance fellowships for in-service providers through recognised national programmes,” says Dr Jain.
Dr Trivedi opines – rebranding of palliative care services to ‘supportive care clinics’ to reduce fear and stigma felt by patients is important. “Language matters. Patients are far more receptive to ‘supportive care’ than to ‘palliative care,’” he explains.