Smriti Rana, Consulting Psychologist and Facilitator for Children’s Palliative Care Project, writes about her experiences at Pallium India’s weekly Children’s Palliative Care Clinic:
What can I tell you about the Thursday Clinic that would adequately sum up the essence of what we witness and experience? Most people’s first reaction to the idea of a clinic for children with life-limiting and life-threatening illness is to recoil – either with the imagined pain, horror, denial and sadness that accompany such an idea, or with the belief that this is the realm of only certain “types” of people, who are “brave”, “courageous” and whatever other associated synonyms you can conjure.
The simple truth, though, is that the people who work at this clinic are not flapping around with halos or wings attached to them. These are everyday folk and by that token, feel everything from intense joy at small victories that are witnessed, to the darkest of despair at the helplessness in some situations.
What makes this space extraordinary, as you can guess, are the children.
The Children’s Palliative Care Clinic was set up in 2012 by Pallium India in collaboration with SAT Government Hospital at the latter’s premises in Trivandrum, Kerala, for 4 hours every Thursday. The vision was to reach out and provide free palliative care to children with a vast range of conditions – neurological disorders and impairments, metabolic diseases, auto-immune diseases, chronic kidney disease, liver disease, malignancies and congenital diseases.
Every week, children of all shapes, sizes and ages stream in, mainly from underprivileged families, most often with their mothers (many of whom are single, after having been abandoned by the husbands once a child with a birth defect is born), sometimes accompanied by both parents or a grandparent, and very often a sibling. The clinic oscillates between chaos and calm, depending on the children that week.
Some are shy and diffident, feeling most secure within a fold of mum’s sari; some are curious and chatty, and some, by virtue of their illness are locked within their own worlds, giving us very few clues as to what this world looks and feels like to them.
At this point, I must confess that I have always considered myself to be terrible with children. So when I walked into that clinic three years ago, it was with more than just a little trepidation. But then an odd thing happened. It turned out that the kids were really good with me.
They forgave my awkwardness, happy to have someone there who was perhaps a little more nervous than they were. They didn’t mind that I didn’t speak their language; they understood me anyway. We forged our friendships relying solely on the universal language of touch, eye-contact and a generosity of smiles. Most of our conversations happened by way of a shared notebook I carried with me every week; some glitter pens (never under-estimate the power of a glitter pen); near-legendary games of knots and crosses or completing squares; drawings of cats, ducks and elephants – quite literally the only three animals I can draw, (if they wanted other animals drawn, I would simply extol the amazing qualities of the three said animals, rendering other animals unworthy of our hallowed notebook).
Coming up on almost 4 years now, being a little more self-assured around them has been a hard-won skill. Just as you settle into a sense of gratification that your work is making a difference, you are blindsided by a complication of the illness, or an externally induced tragedy, usually related to economic conditions. We flounder in the shallows, hoping to muster enough resources to get the ship sailing again while trying very hard to be worthy companions to the children and their families on their journeys.
The other day I accompanied a little boy into a physiotherapy consult. He has been in our care since we started, and despite my best efforts at resistance, has won me over with his almost constant, radiant smile – as demonstrated in the accompanying photograph. He has chronic kidney disease with a host of secondaries that have shaken the bravest of us, even our experienced and unfaltering paediatrician. He has progressively lost mobility and currently has a broken hip and multiple fractures on his shoulder and arm. One of his conditions has resulted in several deposits of calculi in his ureter – in layspeak – he has plenty of kidneystone-like crystals around the clock. I have seen grown men weep thanks to a kidney stone or two, but not this ten year old. Back in the clinic, he patiently waited his turn. It has always been easier for me to watch someone cry than to watch them being brave in the face of insurmountable odds. That day in the clinic, I watched this little boy exhibit amazing grace. The only time he faltered was when a shadow briefly crossed his face as he braced for the excruciating pain he was certain was coming. It was my undoing.
We have now launched what appears to be a very successful toy donation drive via social media. The toys are coming in from all over the world and are lighting up the hearts of not just our little patients, but also their often-invisible siblings, many of whom have never owned a real toy in their lives; and providing a stunningly positive connection between these families and those who are out there in the world on a relatively better wicket. It is uplifting, heartening and proof of the incredible kindness that exists in the face of unspeakable pain, making the Thursday clinic a happier space, one in which the children are bubble-wrapped for a few hours every week.
Over the next few weeks and possibly months, we will bring you more stories from the Thursday Clinic. In the next few months we also hope to evolve from just a weekly clinic to a 24/7 facility.
Walk with us, into this most special of places.
“The concepts, although most relevant to regular clinical practice, were new to most of us” was the most prominent feedback given.
We shall work hard at doing more and more of this kind of programs.
“My mother has cancer; she is on remission, getting treatment from a well-known hospital. She has untreated pain. Till today, I had thought that palliative care is only for the elderly, dying people. Now I understand that my mother needs palliative care. Now I have the courage to recommend that for my mother.”
“Today was the first time that I was being taught by a non-medical person, a psychologist. That was a big lesson for me; not only the topic, but the fact that we have a lot to learn from other medical subjects.”
“This was an experience that I never experienced in my last four years of medical education. I hope this will be repeated every year.”
These were some of the responses that we got from the participants of a two-day undergraduate training program that we took up in Travancore Institute of Medical Sciences, near Kollam, on 26 and 27 June, 2015. 120 students, including both final year students and house surgeons participated in the training program.
We thank Dr Nadeem, Head of Community Medicine, and the authorities in the Medical College for making the training possible.
How we wish we had the opportunity and the ability to make this possible in every single one of the 300-odd medical colleges in India!
Thank you, dear staff members of Kerala Legislative Assembly, for your compassion and for choosing to be our fellow travellers.
Our thanks also to all NESA office bearers – Shaji R Victor (President), S Jayakumar (Secretary) and Manoj Robinson (Treasurer).
There was a lot of activity in Pallium India that afternoon. Ms Rakhi Santhosh, the head of nursing and Mr Manoj G. S., our CEO, decided that if it is the best thing for the girl, she should come and make a home with us. Ms Smriti Rana, our volunteer psychologist, who overheard the conversation, immediately volunteered to find enough funds to bring the girl across, and even go to Tamil Nadu to bring her. We talked to Dr Mallika Tiruvadanan, who said she will offer Rani a home and palliative care in Chennai. But we did not have a phone number to contact the girl. It took many hours to find Dr Sathiya Babu, through Dr Srikanth, a palliative care physician in Puducherry.
Dr Srikanth found from Dr Sathiya Babu that five days before, the girl had been sent away from the hospital because “there was nothing more for them to do.” Dr Sathiya Babu had been looking after her for the previous five days, in his office. But he had no facility to keep her indefinitely. Finally, Dr Sathiya Babu found St. Joseph’s Hospice for Dying Destitutes in Dindugal, went through mazes of formalities and moved her to the hospice. But they had no palliative care physician and could not offer her symptom control. There she was, with pain and maggots. And it was heart-breaking to hear that the girl was now separated from her 14 year old brother. Why on earth! Each was all that the other had in the world; they had braved the world together in the many cruel years after the Tsunami. Why did each have to be torn away from the other in these most important days of the girl’s life?
Well, she is just one of the 21 million. But the boy is not part of that statistic.
Dr Srikanth travelled 100 kms to the hospice to see Rani. She was in pain and Dr. Srikanth made sure that she got the morphine that she needed. She needed one more thing – she asked for an aerated orange drink which she loved. The nearest village where they could buy it was 20kms away, but on the way to Chennai in the ambulance, they stopped at the earliest opportunity and made sure that Rani got all that she wanted – the aerated orange drink, an egg dosa and an omelet.
Rani is now getting pain relief, love and care in Dr Mallika Tiruvadanan’s Lakshmi Palliative Care centre.
To everyone who moved mountains to make all this possible – Dr Sathiya Babu, who kept her in his office room for five days till he could find a place, and struggled with the legal formalities, Rev. Father Thomas, who accepted her in his hospice despite all the limitations and lack of facilities, Dr Srikanth, who spent all his Sunday travelling and many hours on previous days to help Rani, Raghu, a medical student, who accompanied Dr Srikanth, Ms Smriti Rana, who was running a fever and still wanted to go to help Rani, Dr Mallika Tiruvadanan and team who took Rani in with love – we at Pallium India touch your feet. There sure is God in you.
ICPCN’s another post talks about a support service for families of children needing palliative care in Germany. It is good to hear that some good things are happening at least in some countries. Maybe, some day, the few million Ranis and their brothers in the developing world will not be told, “there is nothing more we can do.”