‘It is a place to dwell! We add life to days not days to life.’
These are the phrases inscribed on the white gates that greet all who enter Shanti Avedna Sadan, reverse Mount Mary Church in Bandra, Mumbai.
Previous the gates you see vines of vibrant bougainvillaea, uncommon white hibiscus flowers and different aromatic crops creeping on archways and lining tiny walkways within the stunning backyard, teeming with butterflies and birds.
That is the premises of India’s first hospice care, which was inaugurated on 2 November 1986 and completes 36 years of offering free-of-cost remedy for terminally sick most cancers sufferers in addition to these affected by AIDS.
“‘Shanti’ means ‘peace’, ‘Avedna’, means ‘absence of ache’ and ‘Sadan’ means ‘residence’,” says Sr Ancy Kottuppallil, one of many oldest working members and the administrator of the NGO.
“We get sufferers of all ages, castes, creeds and religions. What now we have seen is that whether or not they’re wealthy or poor, all sufferers undergo alike and on the finish of their remedy, they’re mentally, bodily, spiritually and financially exhausted. So, coming right here is akin to being given a brand new life,” she provides.
She says, “Sufferers typically inform me that they will sleep higher their first night time right here.”
So what does it take to construct 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 used to be a most cancers surgeon for 30 years at Tata Hospital and retired as chief of surgical procedure and chief of the gastrointestinal surgical procedure unit. All I can keep in mind was the plaintive cries of sufferers begging me, ‘Please don’t ship me residence’. They got here from poor households and had nobody to look after them.”
These sufferers from underprivileged backgrounds had been left to face the top with massive fungating cancers or superior breast cancers and needed to be turned away on the hospital. “I couldn’t preserve them on the hospital because the beds had been wanted for sufferers who may gain advantage from lively remedy,” says Dr Luis.
On the time — with institutes just like the Indian Most cancers Society to make sure early detection and rehabilitation and Tata Memorial Hospital for lively remedy — the idea of palliative care was unknown.
Even in the present day, whereas the celebrated institutes within the nation concentrate on bettering sufferers’ high quality of life, Shanti Avedna Sadan focuses on ‘high quality of demise’.
Over 13 lakh Indians had most cancers in 2020. Dr Luis factors out that even when we think about a fraction of those instances to be within the superior levels, we are able to think about the magnitude of the issue.
“Up to now, now we have handled round 35,000 sufferers who didn’t pay a single paisa. All sufferers are handled without spending a dime at our three centres — Mumbai, Goa and Delhi,” he explains.
Sr Ancy disagrees with a smile, “We’ve simply cared for greater than 40,000 sufferers.”
Satisfying a ‘crying want’
In his ebook, Heartbeats of India’s First Hospice, Dr Luis notes, “I needed to be an orthopaedic surgeon, and my pricey mom needed me to observe her footsteps and turn into an obstetrician and gynaecologist. But initially of 1969, I discovered my footsteps main me to the Tata Memorial Hospital.”
Beginning as a resident physician, he needed to “treatment and management most cancers” however his actuality was completely different.
“Nearly 75 per cent of our instances had been within the superior levels of the illness when first seen, and the hope of a treatment was very distant,” he wrote.
To “fulfill a crying want”, Dr Luis pushed for a hospice in India — an concept he bought whereas finding out in London within the 50s when he got here throughout St Christopher’s (hospice). “The care given to terminally sick sufferers and the way comfy they had been proper until the top made me consider the necessity for a hospice in India,” he says.
After rallying at worldwide medical doctors’ conferences and approaching authorities, in April 1978, the Shanti Avedna Belief was shaped. However it will be a gruelling eight years earlier than the hospice opened its doorways to sufferers.
Within the quest to seek out land to construct the ashram, Dr Luis recollects that in direction of the top of that 12 months, he bought a name from Cardinal Simon Pimenta, a trustee of Shanti Avedna, who supplied him the land reverse Mount Mary’s Church.
Nevertheless, from residents submitting a petition to the federal government to not enable the ashram of their space ‘for worry of contagion and odours’ to bureaucrats combating over the land, Dr Luis needed to face all of it.
Then in 1980, by an order of the City Growth and Public Well being Division of the Authorities 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 payment of Re 1.
The ashram in Mumbai was began with 50 beds and now has the capability to serve 100 sufferers. Female and male wards are in separate wings of the constructing.
The remaining space of two,525 sq m was signed over to the ashram as late as 2004 on the identical lease charge, the place in the present day stands the third wing of the hospice the place the workers reside.
Hospice care: ‘Dwelling away from residence’
Talking about one of many very first sufferers on the residence, Dr Luis says, “There was a younger — roughly 10-year-old — boy named Aldrin who got here to remain right here. He had nasopharyngeal carcinoma (most cancers of the nasopharynx) and he died at Shanti Avedna. He was born on the day man went to the moon (in 1969) so we used to say to him ‘Aldrin, you’re going to the moon’.”
For admission to the ashram, households strategy Shanti Avedna with the affected person’s case information. After reviewing the historical past, solely terminally sick sufferers with distressing signs (excruciating ache, fungating ulcers, bedridden sufferers and people dealing with problem consuming or respiration, and so on) are admitted.
“Generally sufferers are in a foul form when they’re admitted within the morning and don’t even make it to the night,” Sr Ancy says. “There are others who survive anyplace between three months to as much as 11 years on the ashram.”
She provides that the youngest sufferers had been as little as one 12 months previous and the oldest has lived until 99.
On the hospice, there are part-time medical doctors, 35 nursing assistants, 10 nuns, 30 volunteers and one counsellor.
“We think about ache reduction and symptomatic remedy. We administer ample quantities of morphine to assist the sufferers really feel comfy,” says Dr Luis.
The workers at Shanti Avedna take particular care of every of the sufferers’ wants and put together particular meals to cater to them. “Some sufferers can solely have a liquid eating regimen, some eat solely mushy meals, some eat all the things — so we put together meals accordingly,” she says.
Each morning, the workers on the hospice go round giving sufferers sponge baths, altering their wound dressings (typically each three hours) and making contemporary beds. “We additionally change the sufferers’ positions each few hours in order that they don’t get bedsores,” she provides.
Sufferers are additionally supplied amenities like televisions, music, film nights, video games, outings to the seaside and rehabilitation companies too.
Dr Luis provides, “Many individuals really feel a lot better after they get their symptomatic remedy. These individuals really feel like they’re cured even when that’s not the case. That’s after we encourage them to go residence for the top.”
Talking of the challenges, Sr Ancy says, “Generally sufferers will not be given correct care at residence so when they’re admitted, their households have a variety of calls for. There are different households who simply need to abandon households in our care. So, after their deaths, we’re those to conduct their final rites.”
She provides that they attempt to conduct the final rites as per the particular person’s faith. For destitute sufferers who die of their care, the workers asks for police clearance earlier than cremating them.
The entire funds for operating the hospice from groceries to medical provides come from charity. “The fantastic thing about the hospice is that now we have by no means charged anybody and we are going to by no means try this,” provides Dr Luis.
Sr Ancy provides, “We wish if extra individuals knew about Shanti Avedna and got here for palliative care a lot earlier.”
Dr Luis says, “There’s nice satisfaction in taking care of terminally sick sufferers, particularly should you relieve their ache. A lot of the sufferers that find yourself at Shanti Avedna have spent their life’s financial savings to battle the illness. So after they come right here, they’re broke, however they’re very grateful that all the things is given free.”
“A number of the sufferers know when demise is coming for them. Just lately, we had a affected person who mentioned it will be her final day that day and she or he died at 3 pm,” Sr Ancy says, including, “After working right here I’ve realised life is gorgeous and demise is exclusive.”
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Edited by Divya Sethu; Characteristic picture supply: Shutterstock
Nationwide Library of Medication, Palliative Care in India: Present Progress and Future Wants; by Divya Khosla, Firuza D Patel, and Suresh C Sharma; 2012 Sep-Dec
India’s most cancers burden: Circumstances & deaths elevated final decade, COVID-19 widens screening hole; by By Rohini Krishnamurthy; 5 January 2022