February 2020 Newsletter
Pallium India trust would like to add two persons to our board of trustees – a person who has gone through serious health-related suffering (SHS) and one who has been a caregiver to someone in SHS for a protracted period of time.
We would particularly welcome anyone who is familiar with the concept of palliative care and with Pallium India and agrees with the vision, mission and core values of Pallium India.
Nominations would be screened by a screening committee from among the trustees of Pallium India for preliminary selection and then submitted to the board of trustees for approval. Interested people may nominate themselves or nominate someone else, with curriculum vitae, any supporting documents and contact details.
Nominations are to be sent to: firstname.lastname@example.org
Last date for receipt of nominations: 5 February 2020.
Our location at Vattappara in Trivandrum had excellent facilities, thanks to the kind-hearted Dr.Thaha, the founder of PMS Dental College. The structure was free for us, but over the last year and a half of our functioning there, we found that our patient services significantly dropped because of the distance from the city. Inpatient and outpatient numbers remarkably decreased and home visit numbers reduced because of the time wasted on roads. However convenient the facility, what is the point if we cannot reach the people who need us?
So friends, we are moving again.
The new address is: Aisha Memorial Hospital, (Enjakkal-Kovalam Highway), Paruthikkuzhy, Manacaud P.O., Thiruvananthapuram, Kerala – 695009 This will be easily accessible to patients of Medical college and those referred from other centres, thanks to the city transport. We’ll be moving in February 2020.
Aisha Memorial is an old hospital that has not been functioning for years and is in dilapidated condition. Before we shift, we wish to renovate and make this facility a beautiful home for our patients and their families. Once it is functional, this facility can deliver palliative care to around 5000 patients a year.
Please donate and help us. The estimate of expenses is given here.
We thank you for always standing by us and supporting us in our work.
Click here to donate: https://milaap.org/fundraisers/PalliumIndiaTrivandrum
Details for direct bank transfer / UPI
Virtual account name: Pallium India – Milaap
Account number: 80808110131619
IFSC code: YESB0CMSNOC
You can also donate by visiting: https://palliumindia.org/donate/
Pallium India joins the chief organiser, Regional Cancer Centre Trivandrum, Cancer Relief India and Indian Medical Association in organising the following two events.
Please note that the first day (22 Feb) is an introductory course for freshers including doctors, nurses and medical students.
The second day’s event (23 Feb) is a refresher course for doctors who have already been trained in palliative care.
Dr Suresh Reddy, MD Anderson Cancer Centre, Texas, USA, Dr M V Pillai, haemato-oncologist from USA, Miss Gilly Burn from UK and Dr Ann Broderick from Iowa, USA will be the visiting faculty joining the Indian team.
Dr CV Prasanth of Regional Cancer Centre Trivandrum is the organising secretary.
A few months back we had brought to you the unwelcome news of WHO withdrawing its pain management guidelines based on what we, with most of the pain and palliative care communities globally, believed was a knee-jerk reaction to an unfair accusation. Now we are glad to share with you the welcome news that WHO is now proceeding with the scoping process for development of two new documents:
1. Clinical guidelines for management of chronic pain in children, and
2. Policy guidelines for balanced access to controlled medicines.
We are glad that Pallium India has an opportunity to be part of both processes. We see this as vitally important; representation from developing countries is vitally important to make the guidelines truly global.
India was living with a curious legal situation in which a brain-dead person could be declared dead if a candidate for organ transplantation, but not otherwise.
Kerala has brought in a law which clarifies the issue. It lays down scientific criteria for certifying brain death and for cessation of artificial life support in that event.
The 27th international conference of the Indian Association of palliative care is scheduled to take place at Guwahati, Assam from 14-16 February 2020, with pre-conference workshops on February 13th.
India has lost a great humanist, paediatrician and scientist with the death of Dr. M. K. Bhan on 26 Jan 2020. He pioneered a rotavirus vaccine, and was an excellent science administrator and leader of many missions in health and nutrition.
Read more about Dr Bhan:
A conference in Kozhikode on Geriatrics and Gerontology on 29 Feb and 1 March includes themes like pain management, palliative care and end of life care.
Stalwarts of the field including Dr M V Pillai will lead the workshop organised by Professor R Krishnan on behalf of Baby Memorial Hospital and Kerala University of health sciences. Pallium India is proud to join them as a co-organiser.
International Association for Hospice and Palliative Care (IAHPC), announces the launching of the online course “Advocating for Palliative Care in the Multilateral System” (Basic).
The online basic course was developed by Dr. Katherine Pettus, IAHPC Advocacy Officer and it builds on her work and expertise as an advocate for palliative care.
At the conclusion of the course, participants will be able to:
- Explain and discuss the basic multilateral advocacy terms and language.
- Identify and understand the role of the key institutions and meetings involved in palliative care advocacy.
- Locate and translate the multilateral documents that oblige governments to provide palliative care services in your country.
- Describe the basic mechanics and challenges of multilateral advocacy.
- Recognize the importance of partnerships and collaborations in palliative care advocacy.
സഹയാത്ര (Sahayatra), the Malayalam palliative care magazine published by Pallium India in association with IAPC (Kerala), invites entries for a digital photography contest.
Theme: palliative care
The photographs may be remotely or directly related to palliative care, or in some way conveying the message of palliative care.
Six short-listed photographs will be published as Sahayatra cover image with photo credit, beginning from issue April 2020 through Sep 2020. Sahayatra’s readers can vote for the best photo among these six images.
A contest jury consisting of photographers and other experts will decide the winner, based on their own choice as well as considering the votes from the readers. In addition, complimentary prizes will be given for entries selected by the jury or based on readers’ votes.
The winners will be announced at the World Palliative Care day celebrations on October 10, 2020, at Trivandrum.
Selected photographs will be used in future issues of Sahayatra, with photo credit.
Curriculum building exercise: an effort to meet the growing educational needs for palliative care in India.
As part of an initiative to build a curriculum and to deliver palliative care education to the primary care physician, Pallium India and Public Health Foundation of India (PHFI) joined hands to conduct a write-shop on 6 January 2020 to work on teaching modules prepared already by online interaction. We arrived at a structure with much of the contents and now have clear plans for a time-bound action plan.
Pallium India is very grateful to all at Public Health Foundation of India and to the national team of palliative care experts.
Integrating palliative care into under-graduate medical education is one of the key strategies palliative care activists have identified to advance palliative care on a pan-India basis. In fact, when the activists took the matter of access to palliative care to Supreme Court in 2007, three essential requests were made arguing that lack of access to palliative care violated an individual’s fundamental right to live with dignity as guaranteed by the constitution of India. These included developing central and state government palliative care policies, simplification of 1985 NDPS act and integration of palliative care education in medical and nursing education. While the first two requests tasted fairly good success in the form of state policies and amendment of the 1985 act, integration of palliative care education at under graduate level remains a tough nut to crack barring sporadic and unstandardized courses taught in some institutions.
The Medical Council of India introduced Attitude Ethics and Communication (AETCOM) module and Competency Based Medication Education (CBME) curriculum to redesign medical education in 2018 and 2019 respectively. These recent developments with implicit palliative care values come as a breath of fresh air for the millions who suffer and for palliative care enthusiasts, as now there is a window of opportunity to introduce palliative care specific curriculum to medical institutes in the country without disrupting the current curriculum implementation model.
A steering committee was constituted to conceptualise consolidated palliative care education project. The committee members are Dr M R Rajagopal (Chairman-Pallium India), Dr S P Kalantri (Director, Professor and Medical Superintendent MGIMS Wardha), Dr Mahalakshmi VN (Dean AVMC Puducherry), Dr Dinesh Kumar (Professor Community Medicine, PSMC Karamsad) and Dr Jagdish R Varma (PSMC Karamsad). The committee met for a two-day workshop at Sree Mulam Club Trivandrum on 21st and 22nd of January 2020, facilitated by Pallium India. A four member team from Pallium India too participated in the workshop to assist the experts.
The committee brainstormed and discussed on topics ranging from module template, creation of module and teaching materials, communication, implementation, monitoring and evaluation plan, project proposal and fund raising for the initiative. A comprehensive project plan was devised with strict implementation timeline to kick-start the project this academic year (by August 2020).
Dr Sanjeev Arora, the innovator and founder of the now-famous ECHO (Extension for Community Healthcare Outcomes) International program (its motto, “Move knowledge, not patients”) which has succeeded in educating doctors in 148 countries, visited Pallium India for two days.
There were several discussions, but they also studied how we deliver patient care in Trivandrum, actually joining us on home visits for half a day. He was accompanied by Dr Sunil Anand who leads ECHO India and Dr Rajmohan Panda from the Public Health Foundation of India.
We are also delighted to hear that Dr Sanjeev Arora was awarded a D Sc degree at a ceremony in New Delhi. This was awarded to him by the Hon’ble President of India, Ram Nath Kovind, for Dr Sanjeev’s great contribution for building capacity in the area of Hepatitis and other liver diseases.
Our dear friend Mr Abdul Hameed (everyone calls him Maulana) of Lakshadweep won the national award for benevolence. Maulana received the award from the Governor of Lakshadweep on Republic Day, 26 January 2020.
Lakshadweep is an archipelago of islands off the South west coast of India which form a union territory of India. Maulana and team entered into a partnership with Pallium India to set up a palliative care service in the capital of Lakshadweep, Kavaratti, which later he was successful in spreading to other islands.
Congratulations, Maulana. We are proud to be your fellow travellers.
Congratulations to Dr Ravi Kannan on being awarded the Padma Shri, the fourth highest civilian honour by Government of India on Republic day, the 26th of January 2020.
Dear Dr Ravi Kannan, we rejoice here in Trivandrum.
You have demonstrated to the nation how one person with commitment and sincerity can get together an army of human beings who needed a personality like yours to follow and to achieve miracles. You, your wife Seethaji and your daughter decided to relinquish the ordinary pursuits of luxury that many a high-rated oncosurgeon could have chosen, and chose to work in one of the most deprived parts of India. We have heard how you turned a piece of barren land to a temple of love and care, the Cachar Cancer Hospital. Sitting in one of the farthest corners of India from you, we can almost see the tears of happiness on many a haggard, disease-stricken face of people for whom you are God.
We remember coming to you a few years back with the concept of “pain-free hospital” in which every single patient is asked, “Do you have pain?”, where every single doctor and nurse has gone through a course in pain management and in which pain is always treated optimally. We remember how you embraced that idea of compassion and true to your form, made it happen. Not many would know that yours is one of the only two or three cancer hospitals in the country that have achieved the ‘pain-free hospital’ status.
As Mahatma Gandhi said, “Man becomes great exactly in the degree in which he works for the welfare of his fellow-men”. You are a living example of that maxim. We are proud to have walked a few steps with you in your remarkable journey.
Wilfrid Bruce Davis MBE, the philanthropist who supported palliative care in India for a long time and whom we lost in the year 2018 had instituted a gold medal for young doctors who qualified during the previous five years and who came first in a competitive examination conducted by Institute of Palliative Medicine at Calicut.
Dr. Angeline Yvette Mascarenhas from St. John’s Medical College& Hospital, Bangalore won the Bruce Davis Gold Medal 2019.
The award will be presented during the Annual Conference of Indian Association of Palliative Care, which will be held at Guwahati this month. The medal, a cash award of ₹ 25000 and a citation will be presented to the winner. Hearty congratulations, Dr Angeline.
A little bird tells us that Pallium India’s own Dr Arjun Devarajan came second in the competitive examination. Proud of you, Arjun.
Thank you, K Chittilappilly Foundation, for conferring on us the Award for Excellence in Social Service-2020.
43 years back, a young man started on a remarkable journey on his second hand two-wheeler, with a borrowed capital of ₹100,000. From making voltage stabilisers, his business grew into many fields including amusement parks and property development. Today, he is said to be a $1.3bn net worth individual.
What makes Mr Kochouseph Chittilappilly exceptional is not only the growth from that humble beginning; but also the fact that he uses some of his wealth to ease human suffering. The extent to which he would go would be obvious when you hear that he donated one of his kidneys to someone who needed it desperately. His contributions to the field of health are numerous.
On the 23rd of January 2020, Pallium India joined numerous philanthropists at Hotel Renai in Kochi. Along with Mr Anandakumar of Saigram, who received K Chittilappilly Foundation’s individual award for social service, and with several non-government organizations and individuals who do good deeds through the length and breadth of Kerala, Pallium India was proud to receive the citation and a purse of ₹200,000.
We thank Mrs & Mr Kochouseph Chittilappilly, Dr George Sleeba, and all others at K Chittilappilly Foundation.
Something exceptional happened at Koottanad (Palakkad district, Kerala) on 15th January 2020. On that day, 500 volunteers (including 100 students) visited the people who need palliative care, at their homes, in a massive care service organized to commemorate Kerala Palliative Care Day. People of Koottanad joined this program as volunteers or by giving their vehicles for the purpose or by preparing food for the volunteers. With this, they have declared that they will not turn and walk away when there are suffering families in their neighbourhood.
Pallium India was the proud recipient of Pratheeksha’s Annual Award for a philanthropic organization. In an elegant function on the same evening, Pallium India’s Trustee, Mr.Binod Hariharan received the award.
Mr.Pradeep and all at Pratheeksha, thank you for this great recognition and honour.
Project Aarohan empowers patients and caregivers to mobilise community
It is encouraging to see recent developments in healthcare move towards patient-centric care. Patient involvement and shared decision making are now increasingly being recognized as the key propeller of healthcare redesign. Taking cognisance of the need for patient and caregiver empowerment in palliative care, Pallium India conceptualised a novel project aptly named ‘Aarohan’ (meaning, to rise) for patients and care-givers. Objective of this project supported by World Hospice and Palliative Care association (WHPCA) is to train and motivate patients suffering from serious health related suffering and their caregivers to network and collaborate with people from their community and champion the cause by catalysing a network of palliative care direct beneficiary advocates.
The project was operational from June 22, 2019 to October 19, 2019. Online trainings were delivered on Saturdays from 3 PM to 4.30 PM. A total of 20 participants were selected from 33 applications. Training sessions were delivered online in partnership with Project ECHO, an international NGO offering tele-mentoring programme across 148 countries.
Participants were offered training on various topics ranging from basic advocacy and communication skills to advance directive by leading subject matter experts. Out of the 20 participants, 3 were patients, 13 caregivers, 1 trans-woman and 3 cancer survivors. The project platform offered a unique opportunity for patients, caregivers and palliative care experts to network and interact on matters concerning issues faced by patients suffering from serious health related suffering and their caregivers.
Smriti Rana, Pallium India’s Programme Director, writes:
I already knew I wanted to pursue palliative care just under two decades ago, when I was still a psychologist in training.
But there was a major issue.
Hardly anyone knew what palliative care was, the non-medical side to it even less so.
I did my Masters thesis on the quality of life of caregivers, and gathered my data at a major cancer hospital, where they didn’t quite know where to fit me in, and were genuinely foxed that I was “wasting my time” on this subject. I was even told at the hospital to stick to something well-traversed and easier to understand, like depression or anxiety in cancer patients, and save both my guide as well as my evaluators the hassle of grappling with this strange subject I was hell bent on.
I had a fantastic bunch of professors though, who supported me whole-heartedly. And a brilliant, albeit eccentric, thesis guide who made people shake in their boots and was infamous for throwing painstakingly completed PhDs out his window if he didn’t think they were up to the mark. Under his guidance, I pulled off a decent enough thesis that I thankfully didn’t have to watch sailing through the air towards his neighbour’s yard.
It was a real struggle to find avenues through which I could train in being a mental health professional in palliative care. Both invisible fields. Both terribly underserved. I knocked about and picked up what I could, making it as far as the very prestigious St. Christophers Hospice for a few weeks, only to return and not know how to move forward in the field, till I eventually connected with Pallium India.
Nick Surawy Stepney, a PhD Student at King’s College London, whose research concerns morphine use in northern India, spent 2 weeks in Pallium India. Working with palliative care teams, regulators, and pharmaceutical companies, he aims to understand how morphine is produced, regulated and consumed here. He is currently continuing his fieldwork in Himachal Pradesh.
In the final two weeks of January, I spent a little time with Pallium as part of my PhD research. As this came to a close, it was mentioned that visitors usually contribute a blog post. To the promise of being taken out for chai as a reward, was added the note that this contribution could take any form. ‘Blog post, eight-line poem, even a song!’ I was told. Well, how could I refuse?
Golden butterflies in Chennai demonstrate how 1+1 can be 3. They work with institutions and other non-government organizations (NGOs) to infuse heart into medicine.
Pallium India had the privilege to be part of an event in Kanchi Kamakoti CHILDS Trust Hospital, Nungambakkam, Chennai where Golden Butterflies brought together doctors of eminence as well as trainees and other staff for a discussion on palliative care. The discussions included pain management, social support and end of life care. In addition to the presentation by Pallium India, Dr. Revathi Raj of Apollo Cancer, Dr. Julius Scott of Paediatric Oncology Department, of SRMC, Dr. Rejiv Rajendranath of Intergrated Cancer Care and Dr. Arathi Srinivasan spoke.
When remembering the resistance that palliative care met with in the 1990s, this acceptance of palliative care by the larger medical community was indeed heart-warming.
Later, we also visited RMD palliative care centre run by Dr Republica Sreedhar and team, with whom Golden Butterflies is collaborating to set up a cheerful room for children needing inpatient palliative care.
Pallium India’s Programme Director, Ms Smriti Rana, shares with us a report about how palliative care can bring someone back to life. The length of that life may vary; but as this report will tell you, it can be years.
The article is about a young man treated at Shanti Avedna Sadan, the first modern hospice in India pioneered by Dr Lucito D’Souza, the Oncosurgeon who brought palliative care to India first.
Please read: How India is failing those at the end of life
Dr Vijesh, Pallium India’s project coordinator, shares this excellent article on how India’s health system could improve:
What the list needs added to it is the health system taking on the duty to treat suffering also. Integration of palliative care into healthcare would be the obvious missing link.
Video of the Month: Symptom Management in Palliative Care – Intestinal Obstruction
Watch the video: Symptom Management in Palliative Care – Intestinal Obstruction
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- Feb 14-16, 2020: IAPCON Guwahati
- Feb 22 & 23, 2020: Trivandrum Update in Palliative Medicine
- Feb 29 & Mar 1, 2020: International Workshop on Care of the Elderly
- Mar 2, 2020: Certificate Course in Pain and Palliative Medicine (for doctors) and Certificate Course in Palliative Nursing (for nurses) at Trivandrum. CCPPM: https://palliumindia.org/courses/ccppm/ CCPN: https://palliumindia.org/courses/ccpn/ Contact: +91 8589998760 / firstname.lastname@example.org
- Mar 2, 2020: Advanced Certificate Course in Pediatric Palliative Care at MNJ Institute of Oncology, Hyderabad. Contact: email@example.com
- May 4, 2020: 10 day Foundation course for doctors (FCPPM) at Trivandrum. Contact: +91 8589998760 / firstname.lastname@example.org
- Jun 1, 2020: Certificate Course in Pain and Palliative Medicine (for doctors) and Certificate Course in Palliative Nursing (for nurses) at Trivandrum. CCPPM: https://palliumindia.org/courses/ccppm/ CCPN: https://palliumindia.org/courses/ccpn/ Contact: +91 8589998760 / email@example.com
- Jul 1, 2020: Clinical Fellowship in Pediatric Palliative Medicine at MNJ Institute of Oncology, Hyderabad. Contact: firstname.lastname@example.org
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Diya Chandran is a proponent of Zumba dance. You see her leading the dance in this video.
She teaches Zumba and by doing so, she changes lives. We heard a young woman at her event explain how Diya changed her life around, by helping her to regain control when her body was growing in a way that prevented her from enjoying life.
But that is not all. When she heard about our palliative care work, she decided she had to help. She organized a fund-raising event on 07 December 2019.
That was where we met the celebrity chef, television personality and actress Jagee John (in the pic). Jagee was so enthusiastic to know about our work that she immediately planned and started her ‘operation cake’. She contacted all her friends – each was to donate one cake that was to go to one family from among our patients who no longer had any Christmas in their lives. What a mission of love!
We remember how excited Jagee was for having been selected for the new Big Boss program on Asianet TV channel due to start on 07 January 2020.
However, it was not to be. Jagee died in a freak accident at home on 24 December.
But as soon as they recovered from the shock, Jagee’s friends got back into action. The cakes came. Can you imagine the happiness that the cakes brought to the lives of children for whom Christmas was just something that their neighbours celebrated!
Thank you Jagee. Rest in peace.
And thank you Diya and friends for continuing the mission of love.
posted by pallium india in Newsletter