December 2023
Click here to subscribe to our newsletter
Dear Friends,
Pallium India celebrates its 20th Birthday on December 15, 2023.
(We invite you to join us as we celebrate the day. More information to follow.)
We have travelled far in the last two decades. Let us take a moment to look back, to recognise the ground we covered and to be grateful to all those who travelled with us and gave us strength.
A time of retrospection should also be one of honest evaluation. And an opportunity to contemplate and to decide on the way forward without losing sight of our goal: relieving the health-related suffering of ten million people in India.
“If you want to go fast, go alone; if you want to go far, go together”, the ancient African wisdom teaches us. It was clear to us then and it is clear to us now; this colossal task of reaching ten million people in suffering cannot be done by an organization working alone. It is possible only through concerted efforts, by joining forces with individuals and organisations across the nation that are willing to work together towards this goal, and by facilitating action by newcomers who are committed to the cause. Only through effective dialogues and concerted action will it be possible to identify one another’s strengths and weaknesses, and to bridge the gaps. Organisations may differ in their objectives and modus operandi; but usually it is possible to find matching areas of work together.
We find that our ‘DEF’ (Demonstrate, Educate, Facilitate) strategy has been helpful. In Trivandrum, we demonstrated palliative care delivery balancing quality and coverage with inpatient, outpatient and home visit services. Eight teams travel five days every week to visit the needy in their homes, reaching people ‘where they are’ as the Astana Declaration of 2018 envisaged. The distance they travelled in the last one year was as much as travelling four times round the earth.
Another important factor in attaining our goal is training healthcare professionals in palliative care delivery. We are glad that we have been able to provide training to 3893 healthcare providers so far. Much of this was the result of collaboration with Extension for Community Healthcare Outcome (ECHO) of Albuquerque, New Mexico and with ECHO India. We are glad that during this year we were the recipient of ECHO excellence award.
We continue our work of facilitating action by central and state governments and by individuals, institutions and organisations – for implementation of the Narcotic Drugs and Psychotropic Substances (NDPS) amendment act of 2014, for inclusion of palliative care in National Health Policy and for inclusion of palliative care in under-graduate medical and nursing curricula.
During the current year, as part of a succession planning exercise, I handed over the reins of Pallium India to Mr Binod Hariharan who took over as Chairman. I shall continue as a trustee; nevertheless I want to thank everyone for the support over all these years. I am very happy that the board of trustees was significantly strengthened by the addition of a few stalwarts, Dr Soumya Swaminathan, Dr Vijayakumar, Dr Rajam Iyer and Dr Vandana Gopikumar.
We promise to keep working at our mission evaluating successes and failures and revising strategy whenever necessary.
Dr M R Rajagopal
Chairman Emeritus, Pallium India
The Morphine Manifesto 2023
A global call to improve safe access to immediate release oral morphine
It is estimated that approximately one million people in India suffer from moderate to severe pain every year due to advanced cancer. If people with non-advanced cancer, HIV, and a variety of other progressive, incurable or otherwise life-limiting health conditions are included, experts estimate 7 million people in India are experiencing moderate to severe pain at any given time.
Less than 4% of people in need of palliative care and pain relief have access to it.
Recognising this tremendous gap, Pallium India had first launched The Morphine Manifesto in 2012
However, in spite of the 2014 World Health Assembly Resolution (which states that provision of palliative care and pain relief is an ethical responsibility of health systems), several reports, studies and publications pointing to the essential role of immediate release oral morphine in mitigating preventable suffering, access remains woefully inadequate, or tangled in barriers in many parts of the world, especially in Low-Lower Middle-Income Countries.
In this light, we have updated the Manifesto with help from colleagues at the International Association for Hospice and Palliative Care (IAHPC) and Dr. Eric Krakauer (Director of the Global Palliative Care Program at Harvard Medical School).
We shall launch the updated version, which also aligns with the White Paper on Palliative Care, at the Commission on Narcotic Drugs at a side event on the 5th of December, and use it to call for better access to immediate release oral morphine across the world.
We call on individuals, organisations and institutions to endorse this Manifesto.
It has already received endorsement from all major global and regional palliative care associations and civil society groups.
Join us.
MoU signed with Dr MGR Medical University
Pallium India conducted a one-day workshop at the Tamil Nadu Dr. M.G.R. Medical University, Chennai, to create awareness on palliative care. The event was attended by over 800 doctors and nurses from various departments.
A Memorandum of Understanding (MoU) was signed between Dr MGR Medical University and Pallium India to carry out research work in end of life care.
K Naryanasamy, (Vice- Chancellor, Tamil Nadu DR MGR Medical University), Dr M R Rajagopal, (Chairman Emeritus, Pallium India) and Dr Mallika Tiruvadanan (Founder Trustee, Lakshmi Pain and Palliative Care Trust) were present at the occasion.
The University plans to create a new department for Palliative Care at the national level to provide adequate training to doctors and other healthcare workers. In the upcoming academic years, Dr MGR University will launch BSc in Palliative Care and M.D in Palliative Medicine.
Pallium India is grateful for this opportunity to work with Dr MGR Medical University.
Friends of Elisabeth Kübler-Ross
Anyone connected with palliative care would be familiar with Dr Elisabeth Kübler-Ross (EKR), Swiss-American psychiatrist and author, who sadly left us in 2005. The EKR Foundation works across the globe to spread EKR’s valuable teachings.
Friends of Elisabeth Kübler-Ross is a global membership community including each and every donor contributing to the foundation’s mission.
Pallium India at GTech Leaders’ Meet
Dr. M.R. Rajagopal was the guest of honour at the GTech Leaders’ Meet on October 27 at Hotel Gokulam Grand in Trivandrum, attended by CEOs and MDs of various IT companies in Kerala.
Dr. Rajagopal talked about the importance of Palliative Care and Mr Raj Kalady (CEO, Pallium India) introduced Pallium India and its activities. A participant shared a personal story of how Pallium India provided homecare and comfort to two elderly relatives at the end of their lives.
Accelerating Progress on GoI’s 75/25 initiative
The Multi-stakeholder meeting organized at India Habitat Centre, New Delhi by AIIMS Gorakhpur in collaboration with Global Health Advocacy Incubator on Accelerating Progress on the Government of India’s 75/25 Initiative was a significant step towards addressing the issue of silent killers – Hypertension and Diabetes under Non-Communicable Diseases (NCDs). The aim of the initiative is to screen 75 million individuals in the young adult to mid-adult age group and integrate this initiative heavily into primary healthcare centers.
76th Session of the WHO Regional Committee for South-East Asia
The World Health Organization (WHO) South-East Asia Regional Committee (SEARO) held its 76th session from October 30 to November 2, 2023, in New Delhi, India. The event primarily focused on non-communicable disease (NCD) control programs in the region, and the ministers discussed strengthening primary health care for universal health coverage.
Gilly Burn’s talk on Pain-free Hospital
Ms Gilly Burn gave a talk on Pain-Free Hospital at the auditorium of Dr. Bhubaneswar Borooah Cancer Institute (BBCI), Guwahati, on 26th October 2023. There were almost 70 participants from various disciplines such as doctors, nurses, social workers, auxiliary staff, students, office staff, technical staff, housekeeping staff, and security personnel.
Opioid Availability Workshop in Himachal Pradesh
In a significant step towards improving palliative care in the state of Himachal Pradesh, Pallium India organized a workshop on opioid availability for the state healthcare professionals.
The session, led by Dr. M R Rajagopal, aimed to shed light on the crucial role of essential narcotic drugs and the regulatory framework surrounding their procurement, stocking, and dispensing.
Paediatric Palliative Care O.P
Pallium India’s Paediatric Palliative care Out patient unit is open on all Saturdays at Pallium India, Paruthikkuzhy, Thiruvananthapuram
Time: 10 a.m. to 1 p.m.
Contact: 90721 01193
Evening Special Home Care
Pallium India has started a new service, called Evening Special Home Care (ESHC) for patient care, which would be available from 2PM to 8 PM. A male nurse and a palliative care assistant constitute the team for ESHC.
The intention of ESHC is to cater to the emergency needs of patients who are registered with us, while the regular home visit team is doing scheduled visits.
If anyone you know needs palliative care support, please reach out to us: +91 964 588 4889
Walk With The Weary: Life-changing Lessons in Healthcare
“As a young doctor I wish I had read this book before I started practicing medicine. This book teaches a vital art of connecting with patients. I was often told that books can’t teach that but I am glad there is finally a book that teaches that so beautifully. Dr Rajagopal has been a role model for me and I hope this book inspires budding doctors to learn how to treat people as a whole and not just the disease. This book beautifully preaches that there is care beyond cure and I would highly recommend this to each and every health care worker.”
– Dr Parth Sharma
Get your copy of “Walk With the Weary” (Available in Paperback and Kindle formats, globally)
Amazon IN: https://www.amazon.in/Walk-Weary-Dr-M-Rajagopal/dp/9393852448
Amazon.Com:
https://www.amazon.com/Walk-Weary-Life-changing-Lessons-Healthcare/dp/9393852448/
If you have already read the book, please leave a review on the website or email it to us: info@palliumindia.org
Dr Rajagopal writes about Dr Subathra Muthukumaran, who passed away on November 28, 2023:
The longer you live, the more the losses you go through, each leaving you with an added burden of grief. And when a dear friend who is so very much younger than yourself goes, there is an added sense of injustice, however used to death and dying one may be. And that is how I feel, having lost dear Subathra Muthukumaran, a friend of some 18 years.
Like most early champions of palliative care, Subathra had only one motive in seeking palliative care training – to relieve others’ suffering. This she did in plenty, not with empty compassion, but with scientific medical competence.
When Subathra got cancer and had to go through chemotherapy, I could have the privilege of walking with her in some of her suffering. But recently, I had been negligent and did not keep in touch and hence had no idea that she had recurrence and was suffering. I am sorry, Subathra, I wish I had been a bit more sincere to you.
One gift that she gave me some years back was to introduce to me her daughter Krithika Muthukumaran, who had clearly inherited her mother’s compassion and brilliance.
Krithika and all of Subathra’s loved ones, love and respect from all of us in Pallium India to Subathra and best wishes to you to be able to cope with your grief.
(Image courtesy: IAPC)
Video of the Month
Ambulance Boat at Dal Lake, Kashmir
Mr. Tariq Ahmad Patloo makes his living by renting out his personal houseboat to tourists. He was born and raised in Dal Lake. He built the ambulance boat to ensure the survival of the residents of the community across Dal Lake as well as the safety of the tourists. Read more about him and watch this video.
Click here to watch: https://www.youtube.com/watch?v=M-PkfEbmt5A
Subscribe to Pallium India’s youtube channel for videos related to palliative care and our activities. You can watch previous webinars and training sessions, as well as listen to caregivers, survivors and others sharing their experiences.
Events / Trainings / Conferences
IAPCON 2024
The 31st annual conference of Indian Association Of Palliative Care (IAPC), IAPCON 2024 will be held at the Gujarat Cancer and Research Institute, Ahmedabad, from 9th February (Friday), to 11th February (Sunday), 2024.
For more information visit: https://www.iapcon2024.com
Run for Patients in Need at the Tata Mumbai Marathon 2024!
Registrations for TMM 2024 are now open! The race will take place on 21st January 2024.
Join us in making a meaningful impact by participating in the Tata Mumbai Marathon.
By purchasing a Charity Bib from us, you get to participate in the country’s most prominent marathon event while contributing to the well-being of patients living with cancer, HIV, stroke, and other life-threatening and non-curable illnesses and disabilities.
Register: https://www.unitedwaymumbai.org/ngo-1525
2024 Palliative Congress
The Association for Palliative Medicine of Great Britain and Ireland (APM) host the Palliative Care Congress on an annual basis. PCC events attract over 500 delegates from around the world from a diverse multidisciplinary background.
Registration: https://pccongress.org.uk/registration/
Follow Pallium India on Social Media
A new abode for PASS Pallium, a link center of Pallium India in Pallithura
On November 21, 2023, Tuesday, the new office of PASS Pallium, Pallithura, was blessed by Fr Binu Alex, Parish priest of St.Magdaline church, Pallithura, followed by official opening by cutting ribbon by Dr Arjun Devarajan, Senior Palliative care physician and Section head of Medical Services of Pallium India.
The President of Pass Pallium Mr. Jude Fernandez, Vice President Thomas Gomez , staff members of Pallium India and other well-wishers of PASS Pallium were present.
Antibiotic stewardship in Indian palliative care: a single-center retrospective study
Setting: Trivandrum Institute of Palliative Sciences (TIPS)
This study is the first to analyze an antibiotic stewardship intervention in a palliative care setting within a low- and middle-income country.
Authors: David Thomas, Vijayvardhan Kamalumpundi, Amirtha Thampi, Kashelle Lockman, Mary B. Carter, Navjyot Vidwan and Ann Broderick
Read: Antibiotic stewardship in Indian palliative care: a single-center retrospective study
Music therapy in cancer care: unravelling the complexities in LMICs
Tara Rajendran
The past decades have seen the field of oncology becoming far more receptive to integrative oncology. Music therapy has been used to mitigate symptoms and address psychosocial needs in people with cancer as an adjunct to the primary treatment.
The Healing Power Of Community
Medicine is a very important part of the healing process, but equally important is the human touch. For those struggling with long-term disabilities or illnesses, this connection with humans is both a source of hope and strength, as well as practical support.
Stages of Palliative Care
More often than not, palliative care is misunderstood as end-of-life care. On the contrary, it is an approach that benefits individuals diagnosed with a wide range of serious conditions that make it difficult to live a normal life, including spinal cord injuries, strokes, congenital anomalies, and non-communicable diseases.
Patients and families from anywhere in India can call Pallium India’s Telehealth helpline. Health care professionals who need advice on palliative care or pain management can call our numbers.
The service is FREE and available in English, Hindi, Malayalam and Tamil.
Our lines are open from Monday to Saturday 9:30 a.m. to 4pm
Call: +91 964 588 4889 / +91 860 688 4889
In case of queries, please write to us: info@palliumindia.org
Pallium India maintains a state-wise directory of institutions offering palliative care services in India. The list includes palliative care providers from community-based organisations to tertiary care institutions and cancer care centers.
The directory covers critical information like contact details including phone numbers and email addresses, availability of In-patient, Out-patient and home care services, availability of morphine, etc.
If anyone you know needs palliative care support, our directory will help you find the centre closest to you. Do take a look at Pallium India’s Palliative Care Directory and let us know (Email: info@palliumindia.org or Contact us) if any centre near you is missing.
CAREERS / OPENINGS
For more openings across the country, visit our CAREERS page:
https://palliumindia.org/category/career
In case of queries, please write to us: career@palliumindia.org
Follow us on Social Media for updates
Contact us: info@palliumindia.org / 97467 45497
Click here to donate to Pallium India and lend a hand to our activities.
Donations from US can be made online on http://palliumindiausa.org/
For DOMESTIC Transfer:
Beneficiary: Pallium India Trust
Account No: 30086491915
State Bank of India
Branch: Pattom, Trivandrum
IFS Code: SBIN0003355
MICR No: 695002007
For FOREIGN donations:
Account Name: Pallium India Trust
Bank: State Bank of India (code: 00691)
Branch: Delhi
Account No: 40098265669
IFSC Code: SBIN0000691
SWIFT Code: SBININBB104
Queries? Write to info@palliumindia.org or call 97467 45504
After you make a donation, please write to us at donations@palliumindia.org for the receipt. Kindly provide your name, PAN number, contact number and address for us to issue the receipt.
Follow us for palliative care news, views and updates – as & when they happen
SAHAYATRA
Sahayatra, Pallium India’s monthly print magazine in Malayalam, is meant for anyone interested in Palliative Care – patients, families, palliative care professionals, volunteers and well-wishers.
Yearly subscription rate for Sahayatra is ₹200. (Only ₹500 if you subscribe for three years.) However, we send Sahayatra free of cost to patients and their families.
To receive Sahayatra monthly magazine by post, please send your complete postal address to info@palliumindia.org. Contact: 97467 45504
Read previous issues of Sahayatra online: https://palliumindia.org/sahayatra
PARTING SHOT
No one deserves Pain
Vandana Mahajan
Pain has been declared “The Fifth Vital Sign.” The evaluation of pain has become a requirement of proper patient care, as important and basic as the assessment and management of temperature, blood pressure, respiratory rate, and heart rate. But is pain actually evaluated?
Let me tell you a small, very painful story.
My friend, who lives in the UK, sent me a message seeking help for Ms H. He wrote, ‘She has cancer. Her condition is not good. Can you please help her?’ He shared her contact details with me.
Ms H had been diagnosed with adenocystic carcinoma a few years back. The disease had progressed despite treatment. I dropped her a message. Called her a few times but got no answer. I was told that she is ‘not so much in her senses’ and replies only rarely.
It took me two days to connect with Ms H. Finally she called. ‘Please help me. I am in excruciating pain.’ She started sobbing inconsolably. Her sobs hurt me. I felt her pain through the phone. I felt her pain in my heart. Her plea for help was heartbreaking.
This wonderful lady has been through multiple recurrences for which she has undergone multiple surgeries and treatment! Now the cancer was untreatable! And she was in excruciating pain.
She had been consulting at very renowned hospitals. Sadly, even though these institutions have dedicated Palliative care services she wasn’t referred for Palliative care. Some medicines for pain relief were suggested but it didn’t help her at all. Her sister told me that Ms H was in so much pain that she was taking the prescribed medication every hour and was still crying out in pain. I shudder to think what over-medication must have done to her frail body. Her performance status was very poor, she hadn’t slept in days because of the pain, she was cognitively compromised and weighed only 36kg. To summarise, Ms H was actively dying. She and her family had no Palliative support! Her sister didn’t even know that Ms H was dying. I had to break the bad news to her!
The family, being financially vulnerable, had exhausted most of their savings. Her sister spoke to me. She broke down too. “She cries in pain throughout the day. We don’t know what to do. Please help her!”
I promised to do all that I could. The first step was to get her pain relief.
That’s when I reached out to an NGO that provides home palliative support. A home visit was made the next day. But again I faced another obstacle. Ms H was still not prescribed Morphine. She was advised around the clock pain medication. This only added to her Total Pain. I called her sister who said “Ma’am, there are so many pills. We can’t remember what to give. Please reduce the number of pills down.”
The physical pain Ms H was under was still not controlled. I had to reach out to a few Palliative care friends to push for morphine.
Morphine helped a lot. Ms H not only slept but her pain was under control too. However, this relief lasted for only ONE day! She died 2 days later! She made one last call to the doctor pleading for more pain relief. And then she died…
I have forgotten how many calls I have made to help facilitate this. My mind now feels numb. Her plea was so heart-rendering that I couldn’t sleep at night. I am still haunted by her painful request!
The questions I leave you all with are –
1. If access to pain relief is so difficult in a metropolitan city what happens to those who live in rural India ?
2. Why timely referrals are not made for Palliative care even in hospitals which have a dedicated pall care team?
3. What prevents the treating team from integrating pall care into the main treatment plan?
4. Why can’t we collectively work to give wonderful people like Ms H a dignified end?
5. Did she deserve to die like this?
Echoing the sentiments of Ann Richardson, ‘We cannot change the outcome, but we can affect the journey’.
Ms H deserved better!
(Vandana Mahajan is a Palliative care counsellor with over ten years’ experience in counselling and providing psychological support to cancer patients and their families, and a dear friend of Pallium India’s.)
Thank you for reading our newsletter. Read previous issues here
Don’t miss any updates! Subscribe to receive our monthly newsletter via email: https://www.freelists.org/list/palliumindia
Have feedback? Let us know. Write to us: info@palliumindia.org
Comments are closed.
