In connection with World Cancer Day, February 4, 2021, Pallium India launched a campaign to improve awareness of cancer and to stress the need for palliative care. Titled #LivingWithCancer, it featured survivors, caregivers and others in blogs and videos.
On February 25, 2021, Pallium India organized a webinar on “The Cost of Living With Cancer“. The panel included Vandana Mahajan, a cancer survivor; Simon Paul Iyer, a childhood cancer survivor; Zavher Chowdhury, a caregiver; Chinthana Gopinath, a caregiver, and Dr Aju Mathew, an oncologist and palliative care physician. The talk was moderated by Pallium India’s Smriti Rana.
Zavher Chowdhury spoke about her journey as a caregiver to her mother, to her father and then to her mother-in-law and how consequently her life decisions specifically those about career were determined by it. While she had her good moments and “compassionate support” from her employer, she suffered and still suffers from long term effects like depression, panic attacks etc.
Simon was diagnosed with cancer when he was 12. His illness was not discussed with him. After three to four days of chemotherapy, he had to be in school the next day where he would be made fun of by other kids for wearing a cap and receive the same corporal punishment as the other kids from most of the teachers. He had nobody to talk to him about his biggest fear which was that his “hair won’t grow back.”
Vandana discussed her arduous journey with cancer. Now formally in remission, she lives in constant fear of the disease coming back. She was told by everyone “you’ve got to be strong”. These words only made her block off her feelings. Even while she received the best medical treatment, there was no emotional support provided. After going through severe anxiety, she reached out to a psychiatrist.
Chinthana described the financial struggles of her family and the financial decisions she had to take in the case of her mother-in-law. Retrospectively she regrets the decision of administering ten days of radiation to stabilize her mother-in-law’s spine. After the radiation, the family (Chinthana, her husband and her mother-in-law) decided to not go for the expensive treatment as suggested by the oncologist for it would not have improved the quality of her life.
“The cost of living with cancer is LOSS,” said Dr Aju. “Nobody wins. Everyone loses, including the health provider.” Dr Aju also reminded us that “the most valuable medicines are also the cheapest: the conversation and the touch.”
Reflections to mark 50 years in palliative care: A trinity of patient care, education and training, and research
On March 1, 2021, Dr Robert Twycross, known internationally for his clinical work, teaching and writing, and a founding member of the European Association for Palliative Care (EAPC), celebrates 50 years in palliative care.
To mark the occasion, the EAPC arranged a webinar on February 25, 2021, where Dr Twycross described some of the insights he has acquired over the last five decades.
Please read the EAPC blog where Dr Twycross has shared a few key moments of a professional life, dedicated almost entirely to palliative care, that has impacted globally: https://eapcnet.wordpress.com/2021/02/10/reflections-to-mark-50-years-in-palliative-care-a-trinity-of-patient-care-education-and-training-and-research/
Some of the blogs and videos featured in our #LivingWithCancer campaign are given below.
Read more blogs at: https://palliumindia.org/category/blog
Video of the Month
Subscribe to Pallium India’s youtube channel for more videos.
WHO EB 148 Resolution on Highest Standard of Health for Persons with Disabilities
Dr Katherine Pettus, Advocacy Officer, International Association for Hospice and Palliative Care (IAHPC) writes:
The 148th session of the World Health Organization (WHO) Executive Board, which met at the end of January, approved a resolution that will be sent to the World Health Assembly in May 2021, concerning the highest attainable standard of health for persons with disabilities (PWD). The zero draft of the resolution did not include palliative care but, as a result of coordinated advocacy, the final version now contains it in the spectrum in a Preambular Paragraph:
“Underscoring that the health needs of persons with disabilities need to be met across the life course, through comprehensive preventive, promotive, curative, rehabilitative services and palliative care, including psychosocial support;”
The relevant Operational Paragraph directs the WHO DG
“to develop, in close consultation with Member States and relevant international organizations and other stakeholders by the end of 2022, a global report on the highest attainable standard of health for persons with disabilities, to be submitted for consideration by the Seventy-sixth World Health Assembly, through the Executive Board at its 152nd session, that addresses effective access and quality health services, including universal health coverage (with rehabilitation as part of it), health emergencies and health and wellbeing, that is based on the best available evidence, and that includes actionable recommendations;”
Thank you, Dr Pettus, for informing us of this important development. Pallium India’s Ashla Rani was part of the delegation that spoke at the WHO EB, advocating for palliative care to be included to the consideration of health needs of persons with disabilities.
Improving palliative care education for nurses
“Equipping both nurses and nursing students with palliative care education is critical to improve the overall quality of health care throughout the continuum during COVID-19 and in the face of future health crises”, conclude Pallium India’s friend Billy Rosa (in pic) and colleagues in their paper in the The Journal of Continuing Education in Nursing, titled Global Integration of Palliative Nursing Education to Improve Health Crisis Preparedness
The message is pertinent especially in India where palliative care has been included in medical education but not in nursing education.
On February 4, Pallium India collaborated with Kudumbhasree State Mission and conducted an online awareness session on the forms of cancer common in women.
More than 1600 participants attended the event including Kudumbasree chairpersons, and members of Community Development Society (CDS) and Area Development Society (ADS).
The session was facilitated by Dr Adharsh D (Asst. Professor, Dept. of Surgical Oncology, Malabar Cancer Center, Thalaserry) and moderated by Dr Sreedevi Warrier (Palliative Care Physician, Pallium India). Mr Mathew Joseph Sabu (MSW, Pallium India) explained the available government schemes and the eligibility criteria for each.
Pallium India and Trivandrum Kite Team organized a community awareness program and Kite Festival at Veli beach on February 7, 2021, aimed at improving awareness on palliative care among the public. Members of Students Initiative in Palliative Care (SIPC), Pallium India staff and Trivandrum Kite team members participated.
Mathew Joseph Sabu (MSW, Pallium India) says, “It was my first experience flying a kite and the joy of seeing a piece of paper soaring up high in the sky couldn’t be expressed in mere words.”
Pallium India’s team also distributed leaflets and copies of Sahayatra magazine to spread awareness regarding palliative care.
Joan Marston, an International Children’s Palliative Care Consultant with Palliative Care for Children a Humanitarian Imperative (PaCCHI), ICPCN Global Ambassador for Children’s Palliative Care and Director of Education and Development for Sunflower Children’s Hospice in South Africa, conducted two sessions on Introduction to Paediatric Palliative Care and holistic care, as part of capacity building for the Pallium India team.
On February 12, 2021, Indian Academy of Pediatrics (IAP) Trivandrum branch organised an online training program on paediatric palliative care for doctors and nurses. Dr P. G Hariprasad (Associate Prof., Dept of Pediatrics, Govt Medical College, EKM) spoke about the significance of total pain and provided an overview about symptom management in paediatric patients. Dr Anju Miriam John (Medical Officer, PHC Aruvikkara) spoke about palliative care setting at the government level. Dr M M Sunilkumar (Additional Director, Trivandrum Institute of Palliative Sciences) addressed the importance of community involvement in palliative care and its implications on the life of patients.
Pallium India and Indus Cycling Embassy organized a Palliative Care Awareness Cycle Ride on World Social Justice Day, February 20, 2021. NCC Trivandrum group trainer Lt.Col.Ranjit Mathew flagged off the event at 7 a.m. from Manaveeyam Veedhi. The aim of this event was to proclaim that palliative care is a human right and that every single person who needs it should have access to it.
Ashla Rani, Pallium India’s trustee, gave a talk titled “Receiver to provider: Lived pages from the lens of a youth icon” for the module on Disability Competencies organised by the University College of Medical Sciences, Delhi.
“New Delhi to New Hampshire: Understanding policies in response to COVID that lead to health inequities in transgender care“: Dr. M. R. Rajagopal, Smriti Rana and Harsh Vardhan Sahni spoke at Dartmouth Health Care Foundations – Eric Eichler ’57 Foundations in Medicine and Humanities Seminar series. Members of Pallium India have been visiting faculty at the Dartmouth Health Care Foundations sessions for 3 years running.
Citizens Forum India (CFI) encourages dialogue (supported by credible data and genuine information) to create aware citizens who comprehend their democratic rights & responsibilities. Such awareness of citizens is precisely what is needed for a transformation of today’s healthcare system to one which has place for compassion, empathy, comfort and dignity. It was the privilege of several of us in Pallium India to discuss the relevance of palliative care in healthcare in the country at an online event organized on February 27, 2021, titled “Access to Palliative Care“. An engaged audience shared their personal experiences of suffering, relief and hopes. We hope to have continued interaction with these erudite and thinking citizens.
Pallium India’s Resource Mobilisation Manager, Shriya Singh, participated as a panelist at the webinar, How to Attract, Engage and Retain donors as an NGO organized by Milaap.org on World NGO Day, February 27.
Congratulations to Sheeba R S and Anu Thelly who are among the “pioneering nurses from around the world” featured by St Christopher’s Hospice!
We are all proud of you, Anu and Sheeba!
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Help is just a call away.
The current pandemic has brought with it a cloud of grief, and many of us are not equipped with the tools to deal with it.
If you have lost a loved one, if you are finding it hard to cope, if you are feeling sad, angry or lonely, do call us:
SUKH-DUKH Helpline +91 759 4052 605
Do share this with your friends who might need emotional support.
Touching Hearts, Gently
A quarter of a century back, choosing to see aching hearts and aching bodies and to do something about them, Dr Priyadarshini Kulkarni embarked on a journey of learning, easing and soothing. This book is about her journey, the many hearts that she touched, and the lessons she learnt.
You should not miss it. You will find that it prepares you to deal with this business of life, even when your path is not strewn with rose petals.
For more information and how to get a copy : http://www.abhayjoshi.net/thg.pdf
28th International Conference of Indian Association of Palliative Care (IAPC) – An Online Conference coordinated by AIIMS Patna
Theme: Searching Empathy Through Research
Date: 19, 20 & 21 March, 2021 (Friday, Saturday, and Sunday)
Time: 4:00 pm to 8:00 pm
Pre-conference workshop: Wednesday, the 18th March 2021
Registration & other information:
Testimonials regarding our Foundation Couse in Palliative Medicine
“I completed the Foundation Course in Palliative Medicine (FCPM) with a lot of knowledge in palliative care. I have started implementing the lessons while caring for my patients and the results are amazing. I am able to help patients and their family find some peace in spite of all their suffering.” – Dr Edward Faisal, Indonesia
“My journey to palliative care is soon going to begin. I am hoping to be a small wave in the larger part of palliative care and to become the change in the society that I wish to see.  Whoever I reach will always be touched by your efforts that you imprinted in our minds during the online course.” – Dr Jueria Reemi, New Delhi
- March 8, 2021: International Women’s Day
- March 16, 2021: World Social Work Day
- March 19, 2021: IAPCON 2021
- April 1, 2021: Online Foundation Course in Palliative Nursing (FCPN)
- April 6, 2021: Online Foundation Course in Palliative Medicine (FCPM)
- April 7, 2021: World Health Day
- April 28, 2021: Online Foundation Course in Palliative Care (FCPC)
- June 14, 2021: Online Foundation Course in Palliative Nursing (FCPN)
- June 29, 2021: Online Foundation Course in Palliative Medicine (FCPM)
- August 6, 2021: Online Foundation Course in Palliative Care (FCPC)
- September 1, 2021: Online Foundation Course in Palliative Medicine (FCPM)
Check out all our upcoming events: https://palliumindia.org/events
For more information on any of these, write to: email@example.com
Elisabeth Kübler-Ross Foundation launches their next education series, Compassionate Bereavement Approaches featuring world-renowned speakers who will be presenting various EOL topics and engaging with attendees.
This online series will take place each Thursday at 11 AM-12:30 PM (Eastern Standard Time-US) starting on March 18 until May 27, 2021.
For more information, please visit: https://www.ekrfoundation.org/education-series/
Books donated to Pallium India
These Malayalam books have been donated by their authors to Pallium India, for fundraising purposes. Each book costs ₹100. Please contact us if you are interested to get any/all of these books: 97447 90223 / firstname.lastname@example.org
Pallium India invites applications to the post of Physiatrist
Essential Qualification: M.B.B.S, M.D (PM&R)/D.P.M.R. from a recognized university, with Medical Council Registration
Experience: Fresher /1-2 years
Click here to read the complete Job Description and to apply: https://palliumindia.org/category/career
Shevata Rai Talwar, a social worker and human rights activist from Dehradun, writes:
I will miss you always, mom. I wish I had made your end easier by having more knowledge about palliative care. I regret not being there with you so that you could have breathed your last in my arms, surrounded by love, as you so much wanted instead of a cold hospital bed, with your hands tied up and body badly mutilated in a battle to prolong your life span instead of some quality life with us in your last days. Love you always, mom.