At 79, Dr Luis Jose De Souza still makes his way to Shanti Avedna Sadan, India's first hospice, where he is the founder and managing trustee. He tells us what it's like to provide free palliative care for terminally ill cancer patients.
‘This is a place to live! We add life to days not days to life.’
These are the words inscribed on the white gates that greet all who enter Shanti Avedna Sadan, opposite Mount Mary Church in Bandra, Mumbai.
Past the gates you see vines of vibrant bougainvillaea, rare white hibiscus flowers and other fragrant plants creeping on archways and lining tiny walkways in the beautiful garden, teeming with butterflies and birds.
This is the premises of India’s first hospice care, which was inaugurated on 2 November 1986 and completes 36 years of providing free-of-cost treatment for terminally ill cancer patients as well as those suffering from AIDS.
“‘Shanti’ means ‘peace’, ‘Avedna’, means ‘absence of pain’ and ‘Sadan’ means ‘home’,” says Sr Ancy Kottuppallil, one of the oldest working members and the administrator of the NGO.
“We get patients of all ages, castes, creeds and religions. What we have noticed is that whether they are rich or poor, all patients suffer alike and at the end of their treatment, they are mentally, physically, spiritually and financially exhausted. So, coming here is akin to being given a new life,” she adds.
She says, “Patients often tell me that they can sleep better their first night here.”
So what did it take to build this haven for palliative care? We ask 79-year-old Dr Luis Jose De Souza or ‘Luzito’, founder and managing trustee of Shanti Avedna Sadan, and he says, “I was a cancer surgeon for 30 years at Tata Hospital and retired as chief of surgery and chief of the gastrointestinal surgery unit. All I can remember was the plaintive cries of patients begging me, ‘Please don’t send me home’. They came from poor households and had no one to care for them.”
These patients from underprivileged backgrounds were left to face the end with large fungating cancers or advanced breast cancers and had to be turned away at the hospital. “I could not keep them at the hospital as the beds were needed for patients who could benefit from active treatment,” says Dr Luis.
At the time — with institutes like the Indian Cancer Society to ensure early detection and rehabilitation and Tata Memorial Hospital for active treatment — the concept of palliative care was unknown.
Even today, while the prestigious institutes in the country focus on improving patients’ quality of life, Shanti Avedna Sadan focuses on ‘quality of death’.
Over 13 lakh Indians had cancer in 2020. Dr Luis points out that even if we consider a fraction of these cases to be in the advanced stages, we can imagine the magnitude of the problem.
“To date, we have treated around 35,000 patients who did not pay a single paisa. All patients are treated for free at our three centres — Mumbai, Goa and Delhi,” he explains.
Sr Ancy disagrees with a smile, “We have easily cared for more than 40,000 patients.”
Satisfying a ‘crying need’
In his book, Heartbeats of India’s First Hospice, Dr Luis notes, “I wanted to be an orthopaedic surgeon, and my dear mother wanted me to follow her footsteps and become an obstetrician and gynaecologist. Yet at the beginning of 1969, I found my footsteps leading me to the Tata Memorial Hospital.”
Starting as a resident doctor, he wanted to “cure and control cancer” but his reality was different.
“Almost 75 per cent of our cases were in the advanced stages of the disease when first seen, and the hope of a cure was very remote,” he wrote.
To “satisfy a crying need”, Dr Luis pushed for a hospice in India — an idea he got while studying in London in the 50s when he came across St Christopher’s (hospice). “The care given to terminally ill patients and how comfortable they were right till the end made me think of the need for a hospice in India,” he says.
After rallying at international doctors’ conferences and approaching authorities, in April 1978, the Shanti Avedna Trust was formed. But it would be a gruelling eight years before the hospice opened its doors to patients.
In the quest to find land to build the ashram, Dr Luis recalls that towards the end of that year, he got a call from Cardinal Simon Pimenta, a trustee of Shanti Avedna, who offered him the land opposite Mount Mary’s Church.
However, from residents filing a petition to the government not to allow the ashram in their area ‘for fear of contagion and odours’ to bureaucrats fighting over the land, Dr Luis had to face it all.
Then in 1980, by an order of the Urban Development and Public Health Department of the Government of Maharashtra, the reservation on the 4,000-square-metre plot was lifted. Later, the land was leased to the ashram for 99 years for a minimal fee of Re 1.
The ashram in Mumbai was started with 50 beds and now has the capacity to serve 100 patients. Male and female wards are in separate wings of the building.
The remaining area of 2,525 sq m was signed over to the ashram as late as 2004 at the same lease rate. And that’s where the third wing of the hospice (staff quarters) stands today.
Hospice care: ‘Home away from home’
Speaking about one of the very first patients at the home, Dr Luis says, “There was a young — approximately 10-year-old — boy named Aldrin who came to stay here. He had nasopharyngeal carcinoma (cancer of the nasopharynx) and he died at Shanti Avedna. He was born on the same date man went to the moon so we used to say to him ‘Aldrin, you’re going to the moon’.”
For admission to the ashram, families approach Shanti Avedna with the patient’s case files. After reviewing the history, only terminally ill patients with distressing symptoms (excruciating pain, fungating ulcers, bedridden patients and those facing difficulty eating or breathing, etc) are admitted.
“Sometimes patients are in a bad shape when they are admitted in the morning and don’t even make it to the evening,” Sr Ancy says. “There are others who survive anywhere between three months to up to 11 years at the ashram.”
She adds that the youngest patients were as little as one year old and the oldest has lived till 99.
At the hospice, there are part-time doctors, 35 nursing assistants, 10 nuns, 30 volunteers and one counsellor.
“We concentrate on pain relief and symptomatic treatment. We administer adequate amounts of morphine to help the patients feel comfortable,” says Dr Luis.
The staff at Shanti Avedna take special care of each of the patients’ needs and prepare special food to cater to them. “Some patients can only have a liquid diet, some eat only soft food, some eat everything — so we prepare meals accordingly,” she says.
Every morning, the staff at the hospice go around giving patients sponge baths, changing their wound dressings (sometimes every three hours) and making fresh beds. “We also change the patients’ positions every few hours so that they don’t get bedsores,” she adds.
Patients are also provided facilities like televisions, music, movie nights, games, outings to the beach and rehabilitation services too.
Dr Luis adds, “Many people feel much better after they get their symptomatic treatment. These people feel like they are cured even when that’s not the case. That’s when we encourage them to go home for the end.”
Speaking of the challenges, Sr Ancy says, “Sometimes patients are not given proper care at home so when they are admitted, their families have a lot of demands. There are other families who just want to abandon their sick people in our care. So, after their deaths, we are the ones to conduct their last rites.”
She adds that they try to conduct the last rites as per the person’s religion. For destitute patients who die in their care, the staff asks for police clearance before cremating them.
All of the funds for running the hospice from groceries to medical supplies come from charity. “The beauty of the hospice is that we have never charged anyone and we will never do that,” adds Dr Luis.
Sr Ancy adds, “We would like if more people knew about Shanti Avedna and came for palliative care much earlier.”
Dr Luis says, “There is great satisfaction in looking after terminally ill patients, especially if you relieve their pain. Most of the patients that end up at Shanti Avedna have spent their life’s savings to fight the disease. So when they come here, they are broke, but they are very thankful that everything is given free.”
“Some of the patients know when death is coming for them. Recently, we had a patient who said it would be her last day that day and she died at 3 pm,” Sr Ancy says, adding, “After working here I’ve realised life is beautiful and death is unique.”
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Edited by Divya Sethu; Feature image source: Shutterstock