September 2021
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Dear friends,
Whew! We are now able to protect our home-bound patients against Covid-19.
We, finally, are able to get COVID vaccine to all our patients.
Since Covid vaccine came to India, we have been trying to get our patients protected. It was not easy. So many obstacles; so many bureaucratic wrangles. Understandably, most of the obstacles were inevitable. All concerned officials were desperately busy handling several times the workload that they had before February 2020. The formalities, quite understandably, could not be avoided.
For some time in the last month, we lent our staff and vehicles to some primary health centres and community health centres so that their immunisation programme could reach our patients. But that helped to get to only a small percentage of our patients.
And now we have got the approval as a vaccination centre. The district medical officer Dr. Shinu KS and district surveillance officer Dr Dhanuja were very helpful and supportive and finally we could reach people in their homes with the vaccine.
Spreading our wings
Slowly, but surely, we are reaching more and more people in the country. You will find our footprints in most Indian states and union territories.
Pallium India does not provide direct patient care anywhere outside Trivandrum, Kerala. We believe that sustainability of any initiative can be assured only if there are strong local roots. We work with central and state governments for policies, programs, education, improved access to controlled medicines and integration of palliative care into healthcare.
We also work with healthcare providers to start palliative care services, providing our expertise and education and sharing our experience.
Video of the Month: A Conversation about the Hidden Faces of Grief
Pallium India hosted a webinar titled “A Conversation about the Hidden Faces of Grief“, on the 24th of August, 2021. The event was organized to commemorate the death anniversary of Dr Elisabeth Kübler-Ross.
If you could not join the webinar or would like to watch it again, click here for the recording.
The panelists were Ms Helen Issar (Founder of Papagoya – India’s first Scandinavian early years education space), Mr Kumam Davidson Singh (Founder of Matai Project and co-founder of The Chinky Homo Project-Digital Queer Anthology of Northeast India) and Dr. Alka Ganesh (Former HOD Dept of Medicine, CMC Vellore; Geriatric Consultant at GKNMH, Coimbatore).
The session was moderated by Ms Faye D’Souza (Journalist, News Anchor, Entrepreneur) and Ms Smriti Rana (Director-Programmes, Pallium India).
Introducing the session, Smriti spoke about how important it was to acknowledge grief, death and dying. A year ago, Pallium India had organized a webinar on “Why We Need to Talk About Death and Grief“. Those were the early days of the pandemic. Just when we thought things were getting better, came the devastating second wave, exposing us all to various forms of grief and loss. Smriti said, “Today’s conversation is about aspects of grief that we don’t hear about very often, from communities and demographics that don’t usually have a platform to express what grief feels like for them.”
In a recorded video, Mr Ken Ross, son of Dr. Elisabeth Kübler-Ross and the Founder & President of Elisabeth Kübler-Ross Foundation, emphasized the importance of externalising grief: “There is no one way to grieve. Allowing yourself the pain of loss is a way to grieve. Forgive yourself.”
“Grief creeps up in various ways. There has been a certain level of healing that has not taken place,” Faye reminded us. “There is a mental health pandemic underway.”
Dr. Alka brought attention to the different kinds of suffering faced by the elderly. She narrated an incident of elder abuse, due to caregiver burnout. “Older people have the right to dignity. Grief can be losing that sense of dignity, the absence of autonomy and failing health.” She also advises, “find the problems of the caregiver.”
The LGBTQIA community have their problems magnified at the time of the pandemic. “It’s hard to articulate what grief means to us,” said Kumam. “The double trauma of blame – first because of your sexuality and then the virus; the continuous harassment in hospitals, clinics. The lack of visibility for the community: we do not speak about dignity, justice, visibility. Grief for most trans people is being shamed even after death.”
Helen described how children are affected due to COVID19: the loss of routine; the loss of childhood. “Children are privy to adult discussions that any normal five or six year old should not be exposed to. They throw tantrums about seemingly trivial things; that is their way of expressing their grief. School was a safe space that was their own, but that is now gone.”
Smriti pointed out how we forget the “invisible patients” – the elders, the children; the people we miss when we are focussed on the “real” patient.
In her closing remarks, Faye said: “It is important to be vulnerable. To show children, colleagues and teammates that you are human. To ask for help.”
Smriti referred to Sukh Dukh Helpline, the emotional support helpline available in eight languages: English, Hindi, Tamil, Malayalam, Telugu, Assamese, Bengali and Kannada. This is a collaborative effort by Pallium India, Caregiver Saathi, MIND India and EdJackLegs.
Click here to watch the complete webinar video.
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.
If you have any queries, please write to us: info@palliumindia.org
Join this important educational programme in Memorial Sloan Kettering Cancer Centre on October 5 & 6.
In association with the World Hospice and Palliative Care Day 2021, the Memorial Sloan Kettering Cancer Centre organises a two and a half day educational programme on the 5th and 6th of October.
Click for more information: https://mskcc.cloud-cme.com/course/courseoverview?P=5&EID=28753
Note: Registration for people from LICs and LMICs is complimentary.
Pallium India’s Head of Policy Advocacy, Strategic Partnerships and Community Engagement, Smriti Rana, is speaking at the Rapid Fire Session on October 5th. The session theme is ‘Diversity, Inclusion and Social Justice’. Smriti’s specific topic is ‘Palliative Care for Health Equity: Snapshots from India’.
The full, final brochure can be found here: https://mskcc.cloud-cme.com/Assets/mskcc/data/WHPCA_2021Brochure_v2.pdf
Thank you, Dr Jerard M. Selvam and NHM Tamilnadu
We enjoyed hosting Dr Jerard M. Selvam, Additional Director of National Health Mission (NHM), Tamil Nadu, at our headquarters in Trivandrum on 17 July 2021. His visit paved the way for realistic planning.
We discussed our palliative care delivery in Trivandrum and the potential advantages that Tamil Nadu has in making integration of palliative care into healthcare a reality.
A batch of about 100 doctors has already started a foundation course with us. Approximately 300 more will follow.
World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world. This year World Hospice and Palliative Care Day falls on October 9, 2021.
This year’s theme is “LEAVE NO ONE BEHIND: Equity in Access to Palliative Care”.
Please take a look at the campaign toolkit from World Hospice Palliative Care Alliance (WHPCA).
Read more about World Hospice and Palliative Care Day.
Pallium India is also planning some exciting events in connection with World Hospice and Palliative Care Day 2021. Do follow us on Social Media to get updated as soon as we announce the programs!
Pallium India celebrated Independence day
We celebrated India’s 75th Independence Day on 15 August 2021 at Pallium India’s Head Office, Trivandrum.
Mr Anil Kumar, a patient of Pallium India and Mr Kishore Kumar. S, Head HR, Pallium India, together hoisted the flag at 9 AM in the presence of Ms Ashla Rani, Trustee Pallium India and around 15 personnel.
Proud of you, young friends!
65 students from families receiving palliative care from Pallium India in Trivandrum came out successful in the SSLC (tenth standard) and Plus Two exams of 2021.
Congratulations, dear children. We are proud of you all. You have proved your mettle, against all odds.
Scored A+ in all subjects:
(Clockwise from top left)
Alfiya, Arunima, Aruvi, Mushraf, Karthika, Jishnu.
Disability did not stand in their way:
(Clockwise from top left)
Vinayan, Rahul, Adithyan, Sreerag, Sreekuttan.
Scored A+ in all subjects:
(Plus Two commerce stream)
Kalyani
Third rank (Kerala University):
B A Sanskrit
Sona S. Nair
Congratulations, Poonam Bagai
The Founder Chairman of Cankids…KidsCan, Poonam Bagai (who is also the vice-chairman of Pallium India) has been awarded the prestigious Vedica Women Alliance-V-WA 50- A Women Leader in Social Impact 2021.
The Vedica Women’s Alliance (V-WA) is a pioneering initiative built to aggregate, advocate, and amplify the voices of women leaders from across the country and shape an ecosystem that helps women professionals thrive. The V-WA 50 has been instituted to recognise, reward and replicate women’s professional success.
Ms Bagai has been awarded as Woman Leader in Social Impact for her exemplary work & dedication by “Leading development initiatives that work towards an equitable and sustainable world by solving challenges and empowering communities”.
On the occasion of accepting this award, Ms Bagai said, “Cankids as an organisation is not only women-led, we are proud of the fact that 64% of colleagues in our workforce are women. We are strong advocates for fairness, equity and inclusion. Our women Leaders are committed to serve as role models for our women staff, parent members, and girl survivors and inspire them to think big and progress towards a healthier global community”.
Congratulations, Poonam Bagai.
A quest to relieve suffering
Covid-19 has exacerbated the lack of access to palliative care. Building an effective and robust system in this regard will help manage such crises in the future.
Dr M. R. Rajagopal wites in the Indian Express: “Palliative care is the strongest tool we have to relieve health-related pain and suffering. By managing pain, as well as addressing psychological, social and spiritual suffering, patients and their families can face a different experience of illness — dignified and pain-free.”
Value of patients’ time
Writing in the Journal of American Medical Association (JAMA), Dr Christopher Booth of Queens’ University, Kingston, Canada (he is also honorary consultant to Pallium India), Dr Adam Fundytus and Dr Vinay Prasad bring focus on the loss of patients’ time vis-à-vis the benefits of cancer treatment with palliative intent.
“The diagnosis of cancer quickens time and patients lose patience. The good doctor will realize this.”
“In a 2020 study, Bange et al showed that patients receiving palliative chemotherapy for pancreatic cancer spent 10% of their living days actively seeking medical care; this did not include time for laboratory testing or hospital admissions.”
“Before initiating therapy with palliative intent, oncologists and patients should carefully consider potential gains in survival against time spent at the clinic, which comes at the expense of patients spending time with family, traveling, or pursuing other interests.”
You can read the article at https://jamanetwork.com/journals/jamaoncology/article-abstract/2783526
Upcoming Events
- September 1, 2021: Online Foundation Course in Palliative Medicine (FCPM) for doctors.
- September 2, 2021: Online Foundation Course in Palliative Nursing (FCPN) for nurses.
- October 8, 2021: Hats and Masks ON for Children’s Palliative Care
- October 9, 2021: World Hospice and Palliative Care Day
- November 8, 2021: FREE Volunteer Training Program (Online) in English.
- February 11-13, 2022: IAPCON 2022, Jaipur (Registrations Open)
Check out all our upcoming events: https://palliumindia.org/events
For more information on any of these, write to: info@palliumindia.org
Follow us for palliative care news, views and updates – as & when they happen
IAPCON 2022 to be held between 11 & 13 February, 2022
The organizing team of the Conference of Indian Association of Palliative Care (IAPCON) 2022, led by Dr. Anjum Joad Khan from Jaipur, has announced that IAPCON 2022 will be a virtual conference and will be held between 11th and 13th February, 2022.
There will be a pre-conference workshop on Thursday, 10th February, 2022.
Registrations are open.
For more information and to register, please visit the IAPCON website: https://iapcon2022jaipur.com/
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
Hats on for Children’s Palliative Care
The second Friday in October, which this year falls on Friday 8th October 2021, is a day for raising international awareness of the need for children’s palliative care and the work of children’s palliative care (CPC) services worldwide. Now in its 8th year, the annual campaign is known as Hats and Masks On for Children’s Palliative Care with the hashtag #HatsOn4CPC. This is an initiative by the International Children’s Palliative Care Network.
Holding events may be still be challenging for many of us, but don’t worry, even if you are on your own, put on your hat and mask and take a selfie, put it on social media (along with the hashtag #HatsOn4CPC) and send it to communications@icpcn.org
Click here for more info: https://www.icpcn.org/hatson4cpc/
VISIT OUR CAREERS PAGE FOR OPENINGS:
https://palliumindia.org/category/career
Palliative care hit during pandemic, states GIM study
The Covid-19 pandemic has shifted the entire focus of the healthcare sector to those infected with the virus. This has unfortunately meant lower access to palliative care for patients living with terminal illnesses like cancer. Two faculty members from Goa Institute of Management (GIM) have found that in some palliative care centres for the terminally ill, like Dilasa in Goa, there was an 80% reduction in in-patient admissions. Read more >>
Making Palliative Care Everyone’s Business
Dr Zipporah Ali writes: “There is no doubt that a country needs to have its policy makers engaged in, and supporting the integration of palliative care in its health care system. For this to happen, the policy makers should invest in setting systems that ensure that the necessary policies, strategies and guidelines are in place and that there is a realistic plan of implementation, monitoring and evaluation.” Read more >>
“I Play the Veena For Cancer Patients Because I Saw What It Did For My Grandma”
With a Masters in Veena music, Dr Tara Rajendran launched a lecture-concert advocacy programme, ‘Oncology and Strings’. She argues that music therapy is supportive care, and music-based interventions (MBIs) have had measurable positive outcomes in various illnesses. Read more >>
PARTING SHOT
Shouldn’t this be the standard of healthcare?
“Treating the patient holistically, rather than just their disease—shouldn’t that be the standard of health care?”
Ms Peyton Recker asks, in her article on the blog page of Centre for Advancing Palliative care (CAPC) titled Learning about Palliative Care in India, While Waitlisted for Nursing School.
Peyton had joined a group of under-graduate students of IOWA and their consultant Dr Ann Broderick for three weeks with Pallium India, Trivandrum a couple of years back. In small groups, they accompanied our team in our inpatient clinics, in our outpatient clinics and in government hospitals. But clearly, what attracted the most were the home visits.
Please read her article, “Learning about Palliative Care in India, While Waitlisted for Nursing School“.
Peyton quotes Paracelsus, ‘the most fundamental principle of medicine is love’. This short sentence could perhaps define the soul of palliative care.
Thank you Peyton for this article. It was a pleasure to have you and your colleagues with us. We hope you all will visit us again.
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