The Sukoon Hospital
Sukoon Nilaya in Worli is a 16-bedded inpatient facility for patients who are terminally ill from non-cancer conditions. Run by a group of doctors interested in palliative care and supported by Cipla, the ward has all basic facilities to care for patients.
Sanjay Nagral
Oct 30, 2022, Hindustan Times
I first saw Dattaram for liver cirrhosis around four years ago. By the time he came to me, half his body was also limp with a stroke suffered in youth. This had left him jobless and his wife was supporting the family by working as a domestic help. His liver disease was stable, but like most cirrhosis it was progressive. This year, he developed large amounts of fluid in his belly. This would make him breathless and require frequent removal. A classic sign of end stage liver damage. Given his age and stroke, there was no question of advising a liver transplant. Besides, the average cost of a liver transplant today exclusively performed in private hospitals in Mumbai is around ₹25 lakh. It would have been cruel even to suggest one.
This year, Dattaram’s health deteriorated significantly. He was bedridden and could not even walk to the bathroom. The family of five who lived in a one room house in a chawl was finding it difficult to care for him at home. No public hospital would admit him. And private care was beyond their capacity. Not an uncommon story. A few weeks ago, Dattaram’s family informed me that they had admitted him to a hospital where he was being looked after without any charge. ‘It’s a nice place’ they said. ‘He is being fed, cleaned, bathed and fluid is being removed’. ‘Without any fees? Where is this hospital?’ I asked, surprised. ‘At Worli. Will you come and see him at least once? He will be very happy to see you,” they requested.
On Diwali day, I visited Dattaram at Sukoon Nilaya. As you drive down Senapati Bapat Road, modern Mumbai’s ode to consumerism, you hit E Moses road as you turn towards Mahalaxmi. Tucked in this corner, currently hidden by Metro construction, is a gate to a British-era compound of old barrack style buildings with dense foliage called Anand Niketan. One of the buildings is King George Infirmary, a 90-bed facility for the destitute who have been abandoned by their families, many of them amputees. One section is now a 16-bedded inpatient facility for patients who are terminally ill from non-cancer conditions. Run by a group of doctors interested in palliative care and supported by Cipla, the ward has all basic facilities to care for patients. Ward boys who help with cleaning and feeding, a nurse who checks parameters and administers drugs and a doctor who visits every two days. Everything that needs to be done to keep a patient comfortable, clean and pain free is offered.
The family member is trained in the care. Patients are put in wheel chairs and taken to look out to the garden and trees. There is a television, a carrom board and of course plenty of chatting. As we offered sweets to Dattaram and other patients on Diwali, some even politely declined mentioning they were diabetic.
The idea of a hospice for the terminally ill where the focus is on care and not cure is not very new. In Mumbai, the Shanti Avedna Sadan, a beautiful facility on top of Bandra’s Mount Mary Hill, has been around for a long time. Avedna meaning lack of pain serves patients with cancer free of cost. Many of my patients have benefitted from its care and spent their last days in its serene compound. Sukoon Nilaya was created for those with non-cancer conditions who are at the end of life and need comfort and care.
Palliative care in India though currently miniscule is beginning to come of age. It has joined forces with a larger movement for legalising withdrawal of futile care for the terminally ill. What’s interesting is that it is led by doctors specialised in other disciplines who in a sense have broken ranks to advocate palliative care. An unexciting, low technology area with no market or job value in a world dominated by private medicine. And therein lies a deep wound at the heart of our health care. A monetised, cure-based system has simply no interest in those who are at the end of life with terminal illness. Most hospitals do not offer formal palliative care for pain, disability and depression. The moment a disease is terminal, the family is told to fend for themselves. Or referred to the world of NGOs like Sukun Nilaya. Palliative care in India is currently like what art cinema was decades ago in the background of mainstream Bollywood, an act of fringe rebellion.
Those involved in palliative care though must grapple with a unique conundrum. Many of our citizens are bracketed into palliative care because they cannot afford emerging costly therapies. In a sense, this is an escape route for those who don’t wish to square up to the struggle for better access to healthcare which is political in nature. In many countries, Dattaram would have been rehabilitated from his stroke and even had a liver transplant through a state-funded system. By the accident of birth he has no such access.
Many of us may not have the fortune of a sudden death while we are asleep. Nilaya is somewhat easy to translate in English. Home or abode. Many of us may be lucky to have one. It is Sukoon that is difficult. Both to translate and experience.