For a while, I worked in Nirman Kendra near Famous Studios and from the sixth floor, we would look down on a spread of trees that flamed in the summer and were green throughout the year. This little green patch represented the grounds of the King George V Memorial Charitable Organisation, and for a while I would go there to teach mathematics to the underprivileged when I was a mentor at Akanksha. This time I am in Sukoon Nilaya which is a palliative care centre for non-cancer patients.
“Palliative care has a bad reputation,” says medical lead Dr Mary Ann Muckaden, one of the doyennes of the palliative care movement in India. “It’s confused with end-of-life care and we often have parents or siblings or the caregivers saying, ‘We don’t want palliative care’ because they think that’s a sign that the medical fraternity has given up and the patient is going to die.”
She points towards the ward which generally takes in patients who have neurological, nephrological or respiratory issues. “In cancer care, they talk about adding days; we talk here about adding years. With cancer in the advanced stages, it is possible to make a prediction about how long the patient is going to be around. Here I tell the caregivers, ‘Don’t ask me how long your patient has. It may be months, it may be years. Instead, prepare yourself to do your best for the next week. And then the week after that. And so, the weeks can become months and years. It’s impossible to tell.”
The word palliative care comes from the Latin word ‘pallium’ or cloak, something to keep you warm, make you feel better. And across the world, the idea comes into play when you are diagnosed with a life-limiting disease.
“The idea seems entrenched,” says Dr Muckaden. “People seem to think of palliative care as being about death and dying. I prefer to use the term supportive care. It seems easier to change the word that describes what you’re doing than change the entire system.”
Indeed, many of the patients in care right now at Sukoon Nilaya, which was started by Dr Eric Borges, will go home.
We walk together in the green spaces of the King George V Memorial. Here a patient is hobbling about on a walker, taking it easy. Others are just sitting on the benches and letting the greenery and the quiet soothe them.
Dr Muckaden began her career as a radiation oncologist. She does not remember her training at St John’s, Bengaluru, ever talking about palliative care. With her specialisation, she often saw patients in advanced stages. “And that was when I began thinking: ‘There must be more that we can do for them than this’.”
As a devout Christian, she feels her prayers were answered when Dr Robert Twycross and Gilly Burn, a crusading nurse came to India in the early 1990s, to talk about palliative care, a movement whose modern roots were tended by Dr Cicely Saunders in the United Kingdom.
“Dr Twycross was a magnificent person. And what a speaker. I remember him lying down on the stage, on his back, his arms and legs waving in the air as he demonstrated something, talking all the time about how important palliative care was.”
Dr Muckaden went on to get an MSc in Palliative Medicine from Cardiff and began work in palliative care even while she was a specialist at the Tata Memorial Hospital.
After her retirement—she still works there once a week as a consultant—she began dividing her time between Sukoon Nilaya and Shanti Avedna, a hospice in Bandra.
Dr Muckaden feels that working in palliative care needs “empathy. And infinite patience.” But the ward at Sukoon Nilaya is helped by a certain bonding that develops even among patients. “When something happens, all those who can, hurry over to help. Some of it is curiosity, a very Indian trait; the curiosity brings them to the bedside of another patient but then the innate desire to help, another very Indian trait, kicks in. You don’t get one without the other. And so, I often tell caregivers, who live in chawls that they are lucky; people walk through each other’s rooms as by right but they also help without making a big thing about it.”
Although there has been some headway made, Dr Muckaden feels that there are miles to go in the spread of awareness about palliative care.
“I think that every patient needs to be briefed properly on their care and we need to make sure we keep them precious,” she says.
Thanks for all the letters to jerrywalksmumbai@gmail.com. I’m coming to your neck of the woods soon. If you would like to know more about palliative care in India, there’s a helpline ‘1800-202-7777’ operational between 10 a.m. and 6 p.m. from Monday to Saturday. Meanwhile, bear in mind”: Ruk jaana nahin tu kahin haarke…
