July 2015 Newsletter
A recent post from International Children’s Palliative Care Network (ICPCN) says, there are 21 million children living with life-limiting diseases in this world. Well, a few days ago, we heard about one of them. The news came from Ms Hanife MacGamwell of CanKids, New Delhi. She forwarded a request from Dr S. Sathiya Babu in Cuddalore in Tamil Nadu, about a 17-year old girl, Rani (name changed), orphaned by the horrendous Tsunami of 2004. She survived the Tsunami to get osteosarcoma with metastases. Her relatives abandoned her. Dr Sathiya Babu said, “Rani’s hospital says there is nothing more for them to do, could someone offer her a home and palliative care?”
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.”
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 Worldwide Hospice Palliative Care Alliance (WHPCA) and the International Children’s Palliative Care Network (ICPCN) have announced the theme for World Hospice and Palliative Care Day: ‘Hidden Lives / Hidden Patients.’
This year, World Hospice and Palliative Care Day will take place on 10 October. The theme will focus on the patients living in unique conditions who often struggle with access to palliative care including children, LGBT individuals, people living with HIV, prisoners, soldiers and those living in rural settings.
In palliative care, no one should be invisible.There are ‘hidden patients’ with ‘hidden lives’ for whom the need for palliative care is not recognised. Children are often neglected and ‘hidden’, with 21 million children worldwide needing a palliative care approach.
SAHAYATRA, Pallium India’s Malayalam print magazine, is meant for anyone interested in palliative care – patients and families, palliative care professionals, volunteers and well-wishers.
Click here to read the latest issue: http://palliumindia.org/sahayatra/
To subscribe to Sahayatra, please send your complete postal address to email@example.com
What kind of a system do we have to live with, in which, a compassionate doctor does not have access to the cheap medicine produced within the country, but has to prepare and use a dangerous cocktail to relieve someone’s pain?
Please read the blog by Dr Hannah Fox, a dedicated doctor who volunteered for a whole year in Kolkata in India.
Hannah closes her blog by quoting Dr Sankha Mitra, the founder of East India Palliative Care (EIPC):
“The poor die in agony in neglect, the middle class die in agony in ignorance and the rich die in agony on a ventilator. No one gets a dignified and pain-free death.”
“I failed in my practical ‘case-taking’ examination in internal medicine because my heart did not allow me to do the ‘case-taking’ on an 18-year-old boy, who was very sick and whose mother was crying, lamenting the uncertainty and fate. I just sat and listened to them. My professor found my case-taking unsatisfactory and advised me to leave the profession. To this day, I have no regrets for doing so. Now that I have attended the classes on palliative care, I understand that what I did was the right thing, that doctors are supposed to be compassionate and that there are matters beyond physical findings.”
“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!
The Indo American Cancer Association and John and Editha Kapoor Charitable Foundation, in association with Trivandrum Institute of Palliative Sciences, are offering scholarships to practising doctors and nurses, who are interested in learning fundamentals of Palliative Care.
The scholarships are offered to 12 most deserving candidates every year, for the following courses:
- 6 weeks Certiﬁcate Course in Palliative Medicine
- 6 weeks Certiﬁcate Course in Palliative Nursing
The details of the training centres where these courses are offered are given below. Please contact the respective training-in-charge for application details.
- Trivandrum Institute of Palliative Sciences, Trivandrum
Dr. Sreedevi Warrier: firstname.lastname@example.org
- MNJ IO and Regional Cancer Centre, Hyderabad
Dr Gayatri Palat; Ms Vineela: email@example.com
- Bhagwan Mahaveer Cancer Hospital and Research Centre, Jaipur
Dr Anjum Joad; Dr Shikha Jain: firstname.lastname@example.org
- The Gujarat Cancer & Research Institute, Ahmedabad
Dr Geeta Joshi: email@example.com
- Tata Memorial Centre, Mumbai
Dr Mary Ann Muckaden: firstname.lastname@example.org
- SGCCRI, Kolkata
Dr Rakesh Roy: Rex4you@gmail.com
TIPS, Trivandrum, Kerala
- Six Week Certificate Course in Pain and Palliative Medicine (CCPPM) in 2015 – 6 July, 7 September, 2 November.
- Six Week Certificate Course in Palliative Nursing (CCPN) in 2015 – 6 July, 7 September, 2 November.
- 2-day Volunteers Training Program is conducted every month at Trivandrum Institute of Palliative Sciences, Arumana Hospital, Trivandrum. Anyone interested in learning about palliative care can attend.
- Contact: email@example.com, +91 471-2468991, 9746745497.
MNJIO & RCC, Hyderabad, Telengana
- One Month Certificate Course in Pain and Palliative Medicine (CCPPM) for Doctors, Nurses, Social Workers and Volunteers – 6 July
- Contact: firstname.lastname@example.org, +91 91772 38901
BMCHRC, Jaipur, Rajasthan
- 6 weeks’ Certificate Course in Pain and Palliative Care for Doctors and Nurses
- Contact: Dr Anjum Khan Joad. email@example.com.
GCRI, Ahmedabad, Gujarat
- Six Weeks Certificate Course in Pain and Palliative Medicine (CCPPM)
- Six Weeks Certificate Course in Palliative Nursing (CCPN)
- Contact: firstname.lastname@example.org
For more details on the courses we offer, please visit: http://palliumindia.org/courses/
Pallium India is planning to conduct a sensitisation program on palliative care for Social Work Students, all over Kerala. As part of this, request letters have been sent to 30 MSW colleges in Kerala.
If you are interested to know more or if you wish to be a part of this program, please write to us: email@example.com
The 1000-odd employees of the Kerala Legislative Assembly have a robust and compassionate association – the Niyamasabha Employees Sports and Arts Association (NESA). Some time back, they put together a food festival. The festival brought in fifty thousand rupees, which they decided must go to people who may not even have enough to eat. Pallium India got that kind donation from the Honourable Speaker, Shri N. Sakthan.
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).
Here is more international attention on the opioid availability situation in countries like India. Corey Cooper and Gabriele Bettinazzi, writing for Global Health and Travel, talk about the opioid access problem in Malaysia, Vietnam and India. Interestingly, the article links the current problem (very rightly, we think) to the history of opioid abuse in the region.
The article notes that though the Parliament amended the NDPS Act of India, the procedures are not complete. Since the publication of the paper, that is very recently, the central government did issue the required notifications and the matter is up to the state governments for implementation now.
On 29th May, we had blogged about the donation of medical supplies by Dr Erin Springer. We would like to acknowledge the kind donation through Erin from the following companies:
- BSN Medical (Jobst)
- Mediven/CircAid/ CEPcompression
Is it not very heart-warming that people from the other side of the globe care so much about our suffering people?
Pallium India seeks clinically experienced international physicians who are able to practice and teach in a variety of settings, include home visits, outpatient visits, and the inpatient unit. They must be adaptable to new environments and be able to commit to over 3 months. Pallium India will provide translators as most patients will prefer to speak Malayalam. Teaching will be done in English.
If you are interested, please write to us: firstname.lastname@example.org
Contact Pallium India’s Information Centre (9 am to 12 noon) for information related to palliative care and about establishments where such facilities are available in India.
Telephone: +91-9746745497 or E-mail: email@example.com
Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum
For more details, please visit: http://palliumindia.org/info-centre/
The eminent medical teacher and physician, Dr Tushar Shah, organized an interview learning program at the Nanavati Hospital Auditorium in Mumbai, with Dr Nandini Vallath, consultant of Trivandrum Institute of Palliative Sciences, Pallium India. Members of the General Practitioners Association (GPA) of Mumbai came out with numerous dilemmas that they came across, among patients with long term illnesses, including cancer.
“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.
Palliative Care News from around the World
- Enabling India: Going to the Movies
- Germany launches first ever 24 hour helpline for families of life limited children
- Talking to Kids about Death and Dying
- Going Global – a film about children’s palliative care around the world
- Modelling palliative care for the rural poor
- Mexico: Breakthrough for Pain Treatment – Human Rights Watch
- New research shows strong evidence of economic benefits of early palliative care for people with cancer
- Facing the challenges of palliative care: evolution
- Opinion: Cancer care — at what cost?
- Why now? – the increased need for palliative care in modern society
- If access to palliative care and pain relief are human rights, where are we going wrong?
- 95 percent of world’s population have health issues: Lancet
- Painless access to narcotic drugs cheers palliative care community
- Study Points to Need to Share End-of-Life Wish With Family
by Dr M R Rajagopal
Medicine is not an exact science. Doctors’ predictions notoriously turn out to be untrue at times. Dominic Wilkinson argues that a minority of people will indeed defy predictions and live longer than expected. He calls this “the Palliative Paradox” and wonders whether Atul Gawande was right when he said, “you live longer only when you stop trying to live longer”.
Wilkinson compares conventional medical treatment to a river while palliative care is the path that runs alongside. You may get out of the water and walk a bit, and may decide to go back into the water and swim a while. True; this is what happens indeed. Some people continue to swim even when they have been weakened. They would swim against the current and die exhausted, swimming. Others may even enjoy the walk to the end.
Let us hope that the two will merge some day and that the water will flow gentle because the river is now wider and peaceful.
Those who continue to swim in the chaotic waters occasionally may find that the effort has been worthwhile, even while 99% of their comrades suffer and wither. For me, I would quote the anonymous young man who wrote:
Frankly, the most disturbing responses I have encountered to my illness – the responses that, however well-intentioned, leave me with an awful unhappiness – are the “miracle” stories, both secular and spiritual. Everyone has some story – a pilgrimage to Lourdes, a special macrobiotic diet, some scientist in Arizona who “cured” someone who was also given “just a few months to live”.
I don’t doubt that such things happen. I know too much about cancer to underestimate the sheer unpredictability of the disease. But I also know that telling such stories – at least to me – is like telling a person facing bankruptcy that you have a friend who bought a lottery ticket for just one dollar and, what do you know, now the friend is a millionaire!
(Anonymous: A letter to friends. Journal of Pain and Symptom Management. 21:4; 2001).
posted by palliumindia in Newsletter