In two adjoining rooms at the Romila Palliative Care centre, off Pali Naka in Bandra, sit Ibrahim Syed, a 33-year-old man, and Roohi Salamsheikh, a 47-year-old woman. One has had a stroke; the other has been the caregiver of someone who has.Both might seem unlikely recipients of palliative care, which is associated almost exclusively with terminal illness, and invariably, with cancer. Practitioners of this system of healthcare are working hard to change that perception—an effort that was doubled on Saturday’s World Hospice and Palliative Care Day, with awareness programmes conducted nationwide.“There is a misunderstanding that palliative care is only about end-of-life care, but the truth is that it is needed for any life-limiting or life-threatening illness,” says Jerry Pinto, whose 2025 book A Good Life: The Power of Palliative Care describes standout models of care across the country. “Diabetes is a life-limiting illness, so is Parkinson’s Disease. The awareness that these patients and their caregivers need palliation too is not widespread in society.“According to a recent study in the journal ecancermedicalscience, India has just four palliative care centres for every 10 million people.Palliative care works in tandem with medical treatment to reduce pain, control symptoms and minimise distress from serious illness. It’s a holistic approach that encompasses the psychological and financial aspects of life-limiting conditions. So a palliative care team is typically multidisciplinary, consisting not just of doctors and physiotherapists but also psychologists, occupational therapists and medical social workers.“Long drawn-out chronic illnesses drain patients and caregivers of everything, including finances,” says cardiologist Dr. Eric Borges. “Palliative care attempts to ease all incumbent pressures, so that the patient responds better to treatment and improves their quality of life.”Dr. Borges is the founder of Sukoon Nilaya (Abode of Tranquility), a 35-bed, free palliative care facility run by the King George V Memorial Trust at Mahalaxmi. Funded by Cipla Foundation, Tata Trusts and others, it is Mumbai’s only in-patient palliative care facility that prioritizes non-cancer patients, including children.“I initially had a tough time convincing colleagues that non-cancer patients needed help too,” Dr. Borges says, “Awareness of the need for palliative care for non-cancer patients has only emerged in the last 10 years.”At Sukoon Nilaya, patients are admitted for at least 15 days and stay as long as rehabilitation requires. Every patient must be accompanied by a caregiver, who is taught how to look after them at home and must pass a caregiver test before they’re discharged.“We were taught how to exercise, bathe and feed Heba,” says Mirza Abu Wafa, whose 13-year-old daughter, who has Down’s Syndrome, suffered a serious neck injury and was on a ventilator for five months at Wadia Hospital. “We were told she would never survive without a ventilator. But at Sukoon Nilaya, she was off it in 13 days,” says Mirza, who gave up his job on a goat farm to care for his daughter and borrowed money for her medical expenses. “I spent Rs 15 lakhs at Wadia. And zero at Sukoon Nilaya, where we spent two months.”The brief often goes beyond conventional healthcare. “A family may need food rations, educational assistance or even a means of livelihood,” says Anita Bansode, a medical social worker at Sukoon Nilaya, who recently helped a patient’s father, a tailor, obtain a sewing machine through an NGO.Roohi Salamsheikh and her husband Abdul had never heard of palliative care until they came by a pamphlet at Cooper Hospital. They got in touch with Romila Palliative Care (RPC) for help with Roohi’s mother, who suffered a stroke in 2021. As the primary caregiver, Roohi developed severe backache tending her bed-ridden mother in her small Jogeshwari rental. “I grew weak and depressed,” she says, describing caregiver burnout. Relief came with RPC through free medicines and diapers, monthly doctor visits—and crucially, a helpline.“Palliative care views the family as a unit of care,” says Dr Bhavika Hotchandani, Program Director at Romila Palliative Care, part of the nonprofit SNEHA, whose model constitutes home-based care, outpatient clinics in government hospitals and community outreach, including awareness camps and doorstep drives in vulnerable neighbourhoods of Dharavi and Andheri. They support approximately 1,700 patients a year, free of cost.Dr. Hotchandani says their work is structured across three pillars: caregiver empowerment, with practical training in duties like bed mobility and wound dressing; psychosocial and bereavement support; and navigational support, where families are assisted in figuring out referrals to specialists, hospitals, and other services.SNEHA’s model includes home-based care, outpatient clinics in government hospitals and community outreach, including in vulnerable neighbourhoods. They support approximately 1,700 patients a year, free of cost. In 2022, it entered a public-private partnership with the BMC to run palliative care OPDs in government hospitals.The government knows palliative care matters but has been slow to act. The National Programme for Palliative Care was launched by the Ministry of Health and Family Welfare in 2012, but it remains on paper. However, practitioners in the state see hope in plans announced by Mah’s health department earlier this year to set up palliative care centres and home-based care in every district.Home care is the most important part, says Dr. Geeta Joshi, President of the Indian Association of Palliative Care. “Palliative care is the only specialty where you have to go to the home of the patient. And so, it’s vital to integrate hospital-based services with community-level services,” she says, adding that private hospitals are loath to do so due to lack of revenue.There’s little uptake by practitioners too, because it’s neither lucrative nor attractive, says Dr. Prakash Fernandes, Head – Palliative Care Partnerships, Cipla Foundation, which runs the Cipla Palliative Care & Training Centre in Pune. “An attitude change is needed, where palliative care is not viewed as ‘good to do’, but as an essential part of regular healthcare. It should be integrated into the MBBS curriculum,” he recommends.Eventually, it’s only the gov that can drive palliative care at scale, says Dr. Borges—and it’s people who should demand it.
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