One fine morning, Avdesh, a migrant labourer living in Mumbai, woke up to a terrifying reality as his body, from the neck down, did not respond. His roommates rushed him to hospital and informed his family. After a battery of tests, he was diagnosed with Guillain-Barré Syndrome (GBS), a rare autoimmune condition in which the body’s immune system attacks the nerves, often leading to rapid muscle weakness and paralysis. Weeks of intensive care helped stabilise him, but the illness left him quadriplegic.
As he was unable to move his arms or legs, his battle for life did not end with discharge from the hospital. It was at Sukoon Nilaya Palliative Care Centre in Mumbai that Avdesh’s path took a decisive turn from despair to recovery. A multidisciplinary team, comprising doctors, nurses, physiotherapists, occupational and speech therapists, psychologists, social workers, counsellors, and trained volunteers reassessed his condition and crafted a personalised care plan.
Nearly six weeks into rehabilitation, Avdesh surprised even his caregivers, said Dr Vijayshree Patil, director therapeutic, academics and research at Sukoon Nilaya. He regained enough strength to walk independently and manage his daily work. He was not only discharged cheerful, but also encouraged and motivated fellow patients navigating life-altering illnesses, Dr Patil added.
As the centre provided treatment and care for free, his wife and brother, who stayed with him round-the-clock, did not have to worry about basic sustenance. “It was like a rebirth as I did not expect that I would be able to stand and walk again. Forget about palliative care, we did not have money to meet the treatment expenses. Thanks to the centre, I am back to action,” Avdesh beamed.
The centre was established in 2021 during the Covid-19 pandemic with the support of the Cipla Foundation and run by the King George V Memorial Trust.
Healing beyond hospital walls
Palliative care is a specialised medical care focused on improving quality of life for people living with serious, chronic or life-limiting illnesses. It works alongside curative treatment and aims at relieving all types of sufferings, be it physical, emotional, social or spiritual.
Whether the cause of suffering is cardiovascular disease, cancer, major organ failure, drug-resistant tuberculosis, severe burns, end-stage chronic illness, acute trauma, extreme birth prematurity or extreme frailty of old age, palliative care is needed at all levels.
It improves the quality of life of patients, who are facing problems associated with life-threatening illness and relieves suffering through the early identification, correct assessment and treatment of pain and other problems.
Dr Eric Borges, chairman of King George V Memorial Trust, explained that Sukoon Nilaya addresses total pain - not just physical symptoms, but also psychological distress, social isolation, financial hardship and caregiver burnout. “Our mission is to restore dignity, relieve suffering and help patients achieve the best possible quality of life free of cost, irrespective of economic background,” he said.
Although there are around 526 functional palliative care centres, translating to roughly four centres for every 10 million people, these facilities are mostly for cancer patients. As per WHO estimate, the majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%) and diabetes (4.6%). Many other conditions that require palliative care include kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia and congenital anomalies.
“Palliative care is often misunderstood as end-of-life care for cancer patients alone. It is not a fact. Non-cancer patients with chronic neurological, cardiac, respiratory and degenerative illnesses suffer for years, sometimes decades. They and their families need structured and holistic support,” said Dr Borges, a cardiologist with over four decades of experience.