January 2017 Newsletter
As 2016 winds down to a close, we look back and find it to be a year of a lot of pain; yet one giving hope of better days to come.
This was the year in which the parents of a 5 year old with cancer pain went to court seeking permission to euthanize him; despite our best efforts to get some care to him, he died in pain. There has been a lot of discussion on euthanasia; but little on pain relief. In the international scene we heard of countries legalizing euthanasia – France for one, and Canada started practising it, for another.
We were sorry to lose our dear friend from Iowa, Professor Jo Eland. Rest in peace, Jo.
On the positive side, Pallium India got several accolades in 2016, including the SAARC award from Cancer Aid Society. Our designation as a WHO Collaborating centre was renewed for a period of 4 years. Government of Kerala accredited us, making us one of 12 non-government organizations with that status. Our public interest litigation in the Supreme Court of India concluded, having achieved many of its objects.
The Government of India published on its website its draft law on end of life care. The state of Karnataka adopted a palliative care policy, making it the 3rd Indian state to do so, following Kerala and Maharashtra. Opioid consumption figures for the previous year show them to be higher than ever since 1985; but it is still only about half of what it used to be in 1985 before the NDPS Act.
The public support to our work has been phenomenal. There was a tremendous response to the fundraising events organized gratis by M. Jayachandran in Kochi and by Ashley Elanjickal and team (Saptaswara) in USA.
Thank you everyone for the support and may you have the best for the New Year ahead.
For the children, it was their first time in an aircraft. Their enthusiasm and excitement awakened the child in the grown-ups too.
The event was the fifth anniversary of Pratheeksha Palliative Care clinic at Trivandrum, held on 10th December 2016. Pratheeksha palliative care clinic is run by the departments of Paediatrics and Paediatric Neurology of SAT hospital, in association with Pallium India. Every year, the day is celebrated with a get-together of the children under their care and their families.
This year, everyone was first taken to the Air India Aircraft Hangar. The children and families seated themselves in the aircraft and they even got a chance to enter the cockpit and sit alongside the pilot!
Arif was running around the aircraft, looking for his perfect seat, while Althaf was happy with the snack box distributed by the Air India staff. For Sreekuttan and Rahul, “being inside the aircraft was a dream come true.” Chinnu and Arya listened eagerly to the pilot as he explained to them the working of the aircraft.
After this thrilling start, everyone assembled at DTPC park, Shanghumugham. There were games for the children, followed by cultural programs, songs by Sarangi (a cultural group based out of SAT hospital), and a performance by Nireeksha Children’s theatre. The day is by no means complete without a visit to the beach, so that’s where everyone headed, where the children had a blast.
For the children and the families, it was a respite from the ordeal surrounding illness. And for those of us at Pallium India? What a fulfilling moment – seeing the little ones laugh, play, and be naughty the way only they can. We were motivated by the smiles we saw and the words we heard. Thank you for allowing us to be a part of your journey!
For more photos of the event, please visit our Facebook page.
“Imagine you are offered a plate full of delicacies that you haven’t ever seen or tasted. But they look absolutely delicious and you can eat as much as you want (until it gets over),” says Nincy Mariam Mondly (right).
“Metaphorically that’s what Pallium India gave me, where the plate would be the platform they placed me in and the delicacies would translate to the new and exciting opportunities I was exposed to. The Freedom Art exhibition held from December 16th to 18th was the first platform where I got to display my amateur creations and realize their worth. More than the money I obtained by selling some of my paintings, the possible reasons why people had bought it made me joyous. Apart from exhibiting what I had in me, I met some extraordinary personalities both small and big. For the first time, like how friends would walk holding each other’s hands, 3 of us in wheelchair wheeled ourselves together across the corridor. It felt fabulous.
“The wall art near the railway station at Thampanoor on December 19 was another unforgettable episode in my life and I know for sure that every time I pass by that wall I would smile happily recollecting the time I spent with my friends, painting on it. Not that I ever found myself worthy of being a part of the team, but I would always remember how blessed I felt during those days as I let the brush find its way through the colours.”
“Today”, Nincy continues, “as I look at the four walls that surround me, I know that there is a world full of opportunities waiting out there. No matter how much time goes by, I would always rejoice like a small kid, when God gifts me with a chance to be there.”
Nincy is referring to a few events that Pallium India had organized on Dec 16-19, 2016 aimed at promoting awareness regarding the needs of people in wheelchairs, and to work towards making Trivandrum a Barrier-free city. The first was an exhibition at Saphalyam complex, followed by a painting competition for school children, and a Wall Art program at the Railway Recruitment Board wall.
Nincy Mariam Mondly, whose paintings were on display at the 3-day exhibition, and who contributed to the brilliant colours in the wall in the heart of the city, and everyone at Pallium India who made these events happen, congratulations on finding such amazing human beings to work with”.
(Wall art – Photo by Aju Ashok)
Kerala University of Health Sciences (KUHS) takes an apparently small but in potential giant step – a very important step for the future.
Two decades of our advocacy with the Medical Council of India is yet to bear fruit as far as introduction of palliative care in the undergraduate medical curriculum is concerned. A decision was taken; but it is still awaiting implementation.
Now, Kerala University of Hearth Sciences has shown a way forward by incorporating the principles of palliative care into existing undergraduate curriculum. Please read the news in the Times of India.
This is proof yet again of the need for patient, sustained, multi-pronged advocacy. And advocacy. And advocacy. There is no shortcut.
Thank you Dr M.K.C.Nayar, Vice Chancellor, Dr Mohanan, dean, Dr Mangalam, Registrar Ms Geetha, deputy registrar and all others who worked together to make this happen and to model the way for the country.
It was a pleasure and privilege to do a review of the new palliative care service initiated at Sri Venkateshwaraa Medical College Hospital and Research Centre at Puducherry. The palliative care service in this institution has been started with the support of Tata trust and, under the leadership of Dr Srikanth, professor of community medicine, the service is making progress.
As in most parts of the country, the newly amended NDPS act of 2014 as not been implemented in Puducherry as well. The old complicated process continues. Hence it was a very worthwhile exercise to organize an opioid availability workshop for this purpose.
The meeting was particularly made valuable by the presence of the Director of Medical Services (DMS) and the Food and Drug Administrator (Procurement). The meeting clarified the objectives of the amendment and possible ways of implementation.
The DMS has agreed to do all that is necessary. Together with team at Puducherry, we shall follow up and look forward to see the actual improvement in opioid consumption.
Pallium India had the privilege of taking part in a day of deliberations on end of life care issues and intensive care at Mahatma Gandhi Medical College and Research Centre, Puducherry.
The meeting discussed death and dying, the objectives of medical treatment and the current legal position on treatment at end of life in India.
While it is true that there was some conflict in views regarding the objective of treatment per se (“Is it a doctor’s duty to prolong life at all costs?”), the audience was wildly enthusiastic. The feedback from the scientific and academic forum of the institution which organized the event said, “Doctors kept talking about palliative care for the next couple of weeks. Some doctors have started to hold the hands of patients they are treating, and were communicating with kind words and warmth. This change and goodness will continue.”
We are, we hope, moving towards a more humane end of life care policy in that institution.
It is not at all unusual for palliative care units to see people in pain begging to be killed because they have reached the limits of their suffering.
What would you rather do? Attempt to relieve their suffering or say, “Come; lie down, let us kill you. We even have attractive choices for you with lovely names. Euthanasia. Assisted suicide. Choose!”
Please see the position statement from IAHPC: International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide
“IAHPC believes that no country or state should consider the legalization of euthanasia or PAS until it ensures universal access to palliative care services and to appropriate medications…”
We would like to go one step further and shout from the rooftops: “We do not even have the ethical right to discuss euthanasia, till we have provided access to basic palliative care services to the suffering.”
The world over, millions are in excruciating pain from cancer and other diseases without access to opioids like morphine for pain relief.
Now see the other side of the story. In 2015, 52,000 people died of overdose, mostly from opioids. See the article in the Daily Intelligencer published from New York. According to this, this factor alone reduced life expectancy in the United States.
It is cruel to withhold opioids from people in agonising pain, including even to some with chronic non-cancer pain. It is equally cruel to treat all people with chronic non-cancer pain with opioids as a first line measure.
The principle of balance is the key.
The Indian palliative care world will come together at Coimbatore for the 24th International Conference of the Indian Association of Palliative Care to be held at the CODISSIA in Coimbatore, Tamil Nadu. The conference is being jointly organised by the G. Kuppuswamy Naidu Memorial Hospital and Coimbatore Cancer Foundation.
The aim of this conference is to “ADD VALUE” to
AWARENESS: Increasing awareness amongst the public and health care providers is the key to deliver Palliative Care to all who need it.
LEARNING: It is essential that health care providers, community and family engage and learn to Care.
DECIDING RIGHT: Right decisions made at the right time ensures patient centred care. “It’s your life, it’s your choice”
CARE UNTIL THE END: Palliative Care is a human right and it has to be made available to all until the very end.
To register, please go to http://www.iapcon2017cbe.com/registration-form.php
We feel health care professionals in India and particularly the palliative care community, would find the 6th National Bioethics conference greatly useful and inspiring. The pre-conference satellite meetings will be on the 12th of January and the conference on 13-15 January 2017.
The theme of the conference is “Healing and dying with dignity: Ethical issues in palliative care, end-of-life care and euthanasia”.
For details of the process of registration, please visit http://ijme.in/nbc-20140321/index.php/NBC-6/index/pages/view/registration
Here is an event that makes one sad and, at the same time, inspired. All Kerala Wheelchair Rights Federation organised a procession to submit a representation to the state government regarding their right to freedom of movement. We create beautiful roads, buildings and recreation facilities. It would cost next to nothing to make them accessible to those amongst us who need a wheelchair to move about.
It is so inspiring that numerous people with very little support from the society move forward with creativity and courage, as evidenced in the procession on World Disability Day in Trivandrum on 3rd December 2016. Congratulations, friends.
But what a sad reflection on the society – to see that they have had to take to the street with a demonstration for the society to give them their right!
“A lot of things changed when I started using a wheelchair, including my outlook towards life,” said Ashla Rani, Pallium India’s volunteer, at the inauguration of a charity event organised by Allianz Cornhill at Technopark, Trivandrum, on 7th December, 2016. She spoke about her fall from a train five years ago, which made her a quadriplegic. Now she is a full-time volunteer for Pallium India and a part-time software engineer for a Chennai-based company. “There are many others confined to shadows without any support system to bring them out of the darkness. If each one of us extends a hand to them, we can make a positive change in their lives.”
Pallium India was privileged to be invited to the carnival. Many products were on sale in different stalls at the carnival, put up by different departments of Allianz Cornhill. One stall displayed products made by children from H2O, an organization that works towards rehabilitation of autistic children. Ashla, along with her mother Janaki Krishnan and Babu Abraham, Pallium India’s Advocacy Manager, attended the event.
A part of the proceeds from the carnival will go towards Pallium India’s patient care activities. Thank you very much, employees of Allianz for your compassionate gesture and for your willingness to help others in need.
“I am glad I visited. Though I had done some reading, it was necessary to see the work first hand. It is indeed very impressive”, said Ms Klara Tisocki, regional advisor, Southeast Asia and regional office of World Health Organisation.
On 27 December 2016, Ms Klara Tisocki visited Trivandrum Institute of Palliative Sciences, did home visits with volunteers from Sangamam palliative care society at Uzhamalakkal and interacted with volunteers and staff.
In the picture, you see her with Dr Nandini Vallath, next to the wall art created by our colleagues on wheel chair near Thampanoor railway station, Trivandrum.
Dr. Rohanti Ravikulan has won this year’s Bruce Davis Gold Medal established by Institute of Palliative Medicine, Kozhikode. Dr. Rohanti has completed MBBS from PSG Institute of Medical Sciences and Research, Coimbatore.
The winner of the Bruce Davis Gold Medal is determined by an examination held at the Institute of Palliative Medicine, Kozhikode, with the aim of improving awareness about palliative care among young doctors in India.
Dr Rohanti will be presented the Bruce Davis Gold Medal,a citation and cash award of ₹ 25,000 at the 24th International Conference of Indian Association of Palliative Care held at Coimbatore in February 2017.
The Bruce Davis Gold Medal examination was launched by Institute of Palliative Medicine to honour Wilfrid Bruce Davis, MBE, UK, who has been an active supporter of palliative care in India and the founder of W B Davis Charitable Trust.
Congratulations, Dr Rohanti Ravikulan! And thank you dear Bruce, for all you did for our people.
G. Kuppuswamy Naidu Memorial Hospital, Coimbatore, hosted a public consultation programme on the 17th of November, 2016, to discuss the new End of Life care bill proposed by Government of India. Dr Nandini Vallath, Consultant, Trivandrum Institute of Palliative Sciences, represented Pallium India at the event.
There were presentations from experts in the field, followed by a discussion wherein the public raised questions and received clarifications on end of life care and the proposed bill. The feedback and opinions received from this program will be sent to the Ministry of Health.
The programme concluded with the general agreement that a law regulating medical interventions for the terminally ill is most essential but inappropriate in its current form, and that India requires a clear, humane and meaningful law to protect the terminally ill patients from distressful and undignified dying, and make access to appropriate care available and accessible; and enable doctors to facilitate appropriate decision making in the terminal stages of life and also be able provide end of life care.
Pramukh Swami Medical College in Karamsad, near Anand, Gujarat is one of the institutions where Pallium India has facilitated the creation of a palliative care service. Under the leadership of Dr Dinesh Kumar, Professor of Community Medicine, and with enthusiastic support from the chairman, the dean and the CEO, the recently launched service is thriving and promising to reach greater heights.
Dr M. R. Rajagopal, Chairman of Pallium India, was invited to deliver the H.M Patel oration instituted in the memory of a truly great human being, Sri H.M Patel, who was the Partition Secretary at the time of India’s independence and a close associate of Sardar Vallabhai Patel. Dr Patel’s post-retirement life was dedicated to the upliftment of rural people. Needless to say, it was a huge privilege for Dr Rajagopal and Pallium India to deliver the oration instituted in his name at the H.M Patel Centre for Medical Care and Education. As an interesting point of history, Pallium India trustee Mr Kesav Desiraju IAS (former Principal Secretary Health of Government of India) was the orator at the same event a few years back.
As often happens at palliative care events nowadays, the hall was overflowing and there were many standees at the back. The rising interest about palliative care was so palpable and enthusing.
This is the third institution that Pallium India is associating with, in Gujarat. We collaborate with GCRI in Ahmedabad for the running of a training centre, with Medical College Jamnagar for a palliative care centre initiated a few years back and now we are pleased to add this gem to the collection.
- January 2, 2017: One month certificate course in Pain and Palliative Medicine for Doctors, Nurses, Social Workers and Volunteers in Hyderabad, Telengana. Contact: email@example.com
- January 15, 2017: Kerala Palliative Care Day.
- January 23, 2017: Six weeks certificate course for doctors and nurses in Jaipur, Rajasthan. Contact: firstname.lastname@example.org
- February 10-12, 2017: IAPCON 2017, CODISSIA, Coimbatore. To register, please visit: http://www.iapcon2017cbe.com/
- February 27, 2017: Six weeks certificate course for doctors and nurses in Ahmedabad, Gujarat. Contact: email@example.com
- March 6, 2017: 10 days Foundation Course for doctors at Trivandrum, Kerala. Contact: firstname.lastname@example.org
- March 6, 2017: 6 weeks certificate course for doctors and nurses at Trivandrum, Kerala. Contact: email@example.com
- June 5, 2017: 10 days Foundation Course for doctors at Trivandrum, Kerala. Contact: firstname.lastname@example.org
- June 5, 2017: 6 weeks certificate course for doctors and nurses at Trivandrum, Kerala. Contact: email@example.com
- October 14, 2017: International conference on Peri-operative Cancer Care at Jawaharlal Nehru Auditorium AIIMS, New Delhi. Register: http://www.irchoncoanaesthesia.com/
We welcome international visitors at Pallium India and appreciate the support from our colleagues around the world. We request that you contact us at least 2 weeks prior to your visit so that we can make the necessary arrangements. Sorry; we would discourage “drop-ins” for fear of the impact on patient care.
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: firstname.lastname@example.org
Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum
For more details, please visit: http://palliumindia.org/info-centre/
Dr Raghu is a young house surgeon in Sri Venkateswara Medical College, Puducherry. A year and a half back, he had spent a weekend with Dr Srikanth, Professor of Community Medicine, travelling to Cuddalore to bring a Tsunami orphan, a teenager with advanced cancer and maggots crawling over her wound, to a place in Chennai where she could take palliative care. (Please see our blog, Of Tsunami, an aerated orange drink and an omelet, from June 2015).
We asked Dr Raghu about his experience that weekend. He says, that was an unforgettable experience in his life, being called Anna (‘Big brother’) – Rani, who had so far been rejected by the whole world, the Tsunami making her and her brother orphans, her relatives rejecting them and the medical system abandoning them when she needed it the most – how she latched on to a kind person and immediately called him her big brother. About how little things matter a lot. About how, even today, he feels the satisfaction of having made an enormous difference to a human life in its last few days.
posted by palliumindia in Newsletter