February 2018 Newsletter
The latest issue of Indian Journal of Palliative Care (Jan-Mar 2018) focuses on Methadone, with articles by M. R. Rajagopal, Sushma Bhatnagar, Srini Chary, M M Sunilkumar, Kashelle Lockman, Gayatri Palat, Nandini Vallath, Ann Broderick, Vidya Viswanath and others.
Check out the issue here: January 2018
The Central Government has announced the Padma awards for 2018 and Pallium India’s Chairman Dr M. R. Rajagopal is one of the awardees!!
What an honor! Congratulations to Dr Rajagopal! What a proud moment for all of us at Pallium India!
Kerala Governor honors Dr Raj: On Republic Day, January 26, the Hon’ble Governor of Kerala, P. Sathasivam honored Dr Rajagopal at Raj Bhavan, Trivandrum.
Smriti Rana, Consulting Psychologist and Programme Director at Pallium India, writes:
The Premiere of Hippocratic was held at the Bhartiya Vidhya Bhavan in Bangalore on the 20th of January 2018. The event was hosted by CanKids…KidsCan and Australasian Palliative Link International (APLI).
Hippocratic is a feature-length film exploring the life story of Pallium India’s Chairman – Dr M. R. Rajagopal, or Dr. Raj as he is affectionately known. The story uses Dr. Raj’s narrative to encourage the audience to rediscover the first principals of medicine.
Moonshine Agency, the makers of this film, describe the film as an exquisite first-person account, narrated by David Suchet CBE, that takes us through the extraordinary journey of a global health leader, described by the New York Times as ‘the father of palliative care in India’. Dr. Raj’s mission is to bring ethical practice to modern medicine through whole person care and universal access to essential, and heavily restricted, pain medicines. The narrative reflects on effecting change and relieving unnecessary human suffering in a country of 1.25 billion people, almost one sixth of the world’s population, bringing to light the realities of providing health care in its true sense to the world’s most populous democratic society.
The event was attended by members of the medical and palliative care fraternity as well as lay people from different areas of industry, commerce, journalism, entrepreneurial and social initiatives. One of the aims of the event was to engage the urban population, which still largely remains unaware of palliative care services in the country, or if they are aware, usually misunderstand what this field represents. It hoped to bridge some of the gaps in this awareness, bust myths around palliative care and also to create avenues whereby people know how they can access services in their own cities. Urban engagement is also vital in terms of creating more conversations around access to and availability of pain relief and the alleviation of overall illness-related suffering.
Around 250 people attended the premiere as well as the follow up event at the Bangalore International Centre later that evening.
The calls to action of the event included donating to palliative care services across cities; volunteer time or expertise, refer people to these services and join the conversations that would aid in advocacy to make palliative care more visible in terms of policy implementation, education and service accessibility.
In many ways, the events did achieve a large part of what they intended to.
In the aftermath, Pallium India received many messages and emails expressing what attendees felt.
Some of the messages are given below:
“Thank you so much for calling me. I was actually a lot more emotional than I expected. It brought back so many memories of the past year and it’s exactly one year ago that dad was diagnosed. But a big part of emotion was the gratitude… Seeing that movie made me all the more aware of how lucky dad was and how lucky we were… That we didn’t have to see him go through that pain. And gratitude for the fact that there are so many amazing people like Dr Raj and your team, who are out there fighting for the rest of us. It always so inspiring and very touching to hear about people who put so much of their heart into helping others… Without being too flippant, all I can say is… May your tribe increase.”
“It was eye opening and disturbing too. I am yet to process it. The scale of things is unbelievable. I will do my bit and will be a lot more receptive from now on. Thanx again.”
“I can’t even begin to tell you how much I related to today’s movie and the work you guys do. How I wish I knew better with my dad and made the last few days pain free for him! But Like someone once said – out of great tragedy comes the strength to do something meaningful and I think that’s what Pallium is. Thank you all for doing what you do. I wasn’t able to even talk to you properly after because I was so choked up. My dad is my everything and this in a way was cathartic to me. I look forward to contributing to palliative care in some capacity.”
“It has taken me a few days to say this to you. After I left the event, I felt like a weight had lifted off my shoulders. I have gone through treatment for bipolar disorder, clinical depression and cancer. I have prepared the body of my mother at her funeral. That didn’t scare me. For 10 years, between the ages of 40 and 50, I was numb. Numb with medication. When I finally came out of the haze, I only felt fear. Fear of my own death. I have carried that fear with me so long. But today, the fear is gone. I thought it was the immediate aftermath of watching Hippocratic and experiencing Dr. Raj. But it has been days, and that feeling remains. For the first time in my life, I feel free. I am going to tell everyone to watch this film. And I want to help in any way I can.”
Thank you, Mike and Sue of Moonshine Agency, for making this film.
For more details on the film and to host a screening, please visit: http://hippocraticfilm.com/
The IASP Developing Countries Project Initiative for Improving Pain Education Grant support clinicians in developing countries to improve essential pain education. Multiple grants of US$10,000 each are awarded each year.
You are a candidate for an IASP Developing Countries Project Initiative for Improving Pain Education Grant if you are:
- an IASP member (a full year of membership is required)
- based in a developing country
- not already the recipient of a grant that provides support equal to or greater than the IASP Developing Countries Project Initiative for Improving Pain Education grant.
Deadline is March 14, 2018.
Dr Ann Broderick writes about this year’s ‘India Winterim’ program wherein students from University of Iowa visit Pallium India, Trivandrum, for three weeks.
This year a record number of students and professors from the University of Iowa joined Pallium India/TIPS. In a new twist, the students and professors worked on projects identified by Pallium India staff instead of spending time in the classroom.
One group of students led by Dr. Ann Broderick interviewed (with Palllium India volunteers serving as interpreters) 24 of the 30 vocational rehabilitation patients to determine how to improve the training services provided. Another group led by Dr. Kashelle Lockman reviewed national and regional recommendations for antibiotics for different infections and designed a form to facilitate appropriate use of antibiotics. They also designed a data collection form to see how Pallium India clinicians use antibiotics currently. A third group, led by Dr. Stephanie Gilbertson-White designed interventions to reduce the risk of pressure sores with teaching materials for families, and fun demonstrations with the inpatient and home care nurses.
TEAM IOWA worked hard, and still found time to run in a 2K and 10K race with Pallium India t-shirts, go trekking to Ponmudi, and learn a dance move or two to Jimikki Kammal.
Picture: Students of University of Iowa at the Trivandrum Run on January 13, wearing Tshirts asking people to “Ask Me About Pallium India”
Mike Hill and Sue Collins of Moonshine Agency have done us a huge favour by creating the film Hippocratic, the story of palliative care in India, highlighting the need and possible solutions to the current situation. The producers of the movie and Pallium India seek volunteers willing to translate the script of the narration from English to Hindi, Bangla and possibly other regional languages, for subtitles / voice-over, so that the message of the movie can reach more people.
Anyone with the necessary language skills and computer access, who are interested to volunteer, please contact us: email@example.com.
Our directory of palliative care centres throughout India has a very important function to perform. Every month, we get a large number of desperate questions from people in different parts of India, seeking help for their family members or friends or neighnours, asking for details about the palliative care centre nearest to them.
Many a time we find that our directory does not list any in that area; and we ask around among our contacts, to try to find one in the location.
In short, our directory is grossly inadequate. PLEASE HELP. Please help us by looking at the list of centres that are posted on our website, and check whether there are any palliative care centres that you know of, that we have missed.
You will be doing a lot of good to people who are suffering.
“Ashla’s story is about a remarkable young woman who became severely disabled after falling from a train in India. She has overcome enormous challenges to become Executive Assistant to Dr Rajagopal of Pallium India.”
Fundraiser organized by Sarah Schear:
We are crowdfunding for Ashla Rani, our friend, and a devoted palliative caregiver and disability rights advocate from Kerala, India. As a young software engineer, Ashla became quadraplegic after falling from a train. Through her strength, resilience, and wish to serve others, Ashla now works as Executive Assistant to Dr. M.R. Rajagopal, the father of Indian palliative care. She has become a growing voice for disability rights in India, writing for the Times of India and being honored with the Youth Icon Award of 2017. Ashla is also a trained counselor who supports and inspires patients and families at Pallium India’s halfway home for people living with paralysis.
It is Ashla’s dream and ours that she travel to the San Francisco Bay Area, USA in March 2018 alongside Dr. M.R. Rajagopal.
This journey would allow Ashla to speak on stage with two global luminaries of palliative care, Dr. Rajagopal and Dr. BJ Miller, who himself was seriously injured in a train accident as a young person, and who now provides palliative and hospice care.
CanKids…KidsCan, a registered charitable National Society dedicated to Change for Childhood Cancer in India, invites applications for the post of Palliative Care Physician.
- Position Title: Palliative Care Physician
- Job Description: A full time physician for the only stand-alone pediatric palliative care center in close proximity to 2 leading government hospitals in New Delhi. The center has inpatient / outpatient and ambulatory care services and runs a special palliative care and social support OPD.
- No. of Openings: One
- Location: New Delhi
- Educational qualification: a fully qualified palliative care physician / MD pediatrics
- Experience: Minimum 6 weeks Training and 2-3 years of experience in Palliative Care
- Salary (CTC): Salary will be negotiable and commensurate with qualification, experience and past salary history of the candidate
- How to apply: If you are interested in this position and keen to explore a career with CanKids….KidsCan, please share your CV mentioning your present and expected CTC, passport size photograph at firstname.lastname@example.org. Please mention “Application for Palliative Care Physician – New Delhi” in the subject of your email.
Times of India
The palliative care initiatives would be expanded to more hospitals soon, said health minister K K Shailaja.
After visiting the family meet organised by the health department, National Health Mission and the palliative care unit of the district hospital here, as part of the palliative care day, on Monday, the minister also said more people would be given training in palliative care to provide the service to all those who need it.
She also said the work of the service rendered by the voluntary organisations in this connection is exemplary. It was a great recognition for Kerala when it got the award from the President of India for the initiatives to take care of the elderly, last year, pointed out the minister.
Times of India
Son of a Sub Inspector and growing up in police quarters, Ganesh Kailash wanted to don the khaki one day.
It seemed the logical conclusion since he was a good student and well-built too. Whenever he dropped his dad to the station, his colleagues would tell him to write the qualifying test for Sub Inspectors.
After his post graduation from a college in Chitoor, he did write that test but when a job opportunity came, the young man from Munnoorkode in Palakkad joined a pharma company and worked in Ernakulam for a while before moving to Thrissur with a promotion.
One day, a day in 2006 that Ganesh can never forget, he was on his way to meet a doctor. As he was overtaking a bus on a one-way road, a jeep came from the opposite side and made a head-on collision with his bike.
Chairman of Pallium India, Dr M. R. Rajagopal in conversation with Joyeeta Chakravorty
Palliative care has not gained the importance it deserves here. Sadly, in India we only look at the disease and entirely ignore the person. What we need is not just disease centric- treatment but an individualistic-family centered approach to treating a person. The need for palliative care is greater in India than in the West simply because disease-specific treatment does not reach patients adequately or early enough. In India, it is estimated that 60 per cent of the people dying annually will suffer from prolonged advanced illnesses and more than 60 patients will die from cancer and in pain every hour. At present, less than one per cent of the needy have access to palliative care, which is not exactly a bad thing, but we need the percentage to increase.
Every day, we get involved in unbelievable and incredible situations. Tragedy, sadness, horrific trauma, despair, and hopelessness all wrap themselves around the cases we drop into. We step onto the stage and become part of the story.
Moral distress – the discomfort, angst, and frustration related to situations in which we think we know the “right thing” to do, but cannot due to the situation – is endemic to palliative care and hospice work.
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Irrespective of which ministry proposes it, in 2018, one hopes that health truly finds its way into all policies. This is essential for meeting the pledge to provide universal health coverage by 2030
India is at the crossroads of its journey to provide healthcare to its 1.3 billion people. While major achievements in the past decade include big reductions in maternal and under-5 mortality, elimination of polio, maternal and neonatal tetanus and guinea worm disease and significant expansion of community-based health services, several challenges remain. The most pressing one is dealing with the growing number of people with non-communicable diseases, like hypertension, diabetes, cardiovascular diseases, stroke, cancer and chronic lung disease. These conditions now account for more than 60% of the disease burden and premature deaths. Worryingly, diabetes and hypertension are no longer diseases of the elderly. They also strike the young, affecting productivity and economic growth of the country.
Karen Wyatt MD, Huffington Post
Throughout my career as a doctor working with patients in hospitals, nursing homes and hospices I have had the opportunity to witness the dying process on many occasions. I have learned that even though the outcome of this process is always the same—the death of the physical body—there are many different ways to die.
In fact, each individual has a unique experience at the end of life. For some patients death is a welcome ending to a life well-lived, for others death is reluctantly accepted even though they don’t feel ready to let go of life, and some approach death kicking and screaming all the way. They “rage against the dying of the light” as observed by poet Dylan Thomas in a poem he wrote for his dying father.
Though I have seen that patients receiving hospice care often die with greater comfort than those in the hospital, there are still people who struggle all the way to their last breath, even when they are surrounded by loved ones at home. What makes the difference? Why are some people not able to be at peace when they die? Here are some of my observations from years of hospice work and my recommendations for ensuring that you have a peaceful death:
The searing abdominal pain came on suddenly while Dr. Rana Awdish was having dinner with a friend. Soon she was lying in the back seat of the car racing to Henry Ford Hospital in Detroit, where Awdish was completing a fellowship in critical care.
On that night nearly a decade ago, a benign tumor in Awdish’s liver burst, causing a cascade of medical catastrophes that nearly killed her. She nearly bled to death. She was seven months pregnant at the time, and the baby did not survive. She had a stroke and, over the days and weeks to come, suffered multiple organ failures. She required several surgeries and months of rehabilitation to learn to walk and speak again.
Helpless, lying on a gurney in the hospital’s labor and delivery area that first night, Awdish willed the medical staff to see her as a person rather than an interesting case of what she termed “Abdominal Pain and Fetal Demise.” But their medical training to remain clinically detached worked against her. Later, in the intensive care unit, she overheard her case being discussed by the surgical resident during morning rounds.
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Please give whatever you can. No amount is too small.
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- Feb 3-4, 2018: IAPC State Volunteers Meet 2018 – Feb 3,4 at Muhamma Alappuzha. Contact: 99477 72077
- Feb 4, 2018: Colloquium: “Compassion in Care” at Barathiya Vidya Bhavan, Bangalore. Contact: firstname.lastname@example.org / email@example.com
- Feb 23, 2018: IAPCON 2018, Jawaharlal Auditorium, AIIMS, New Delhi. Visit: http://www.iapcon2018.com/
- Feb 24, 2018: 8th Congress on PAIN – South Asian Regional Pain Society. Contact: firstname.lastname@example.org Website: www.bsspbd.com
- Mar 5, 2018: 6 weeks certificate course in palliative medicine and nursing (CCPPM, CCPN) at Trivandrum. Register: http://palliumindia.org/courses/ Contact: email@example.com / 8589998760
- Apr 23, 2018: 10-day Foundation course for doctors at Trivandrum. Contact: firstname.lastname@example.org / 8589998760
- May 14, 2018: 10-day Foundation course for doctors at Trivandrum. Contact: email@example.com / 8589998760. Last date to apply: May 1
- May 30, 2018: 3rd ICPCN Conference, Durban, South Africa. Visit: http://www.icpcnconference.org/
Have Queries? Contact: firstname.lastname@example.org.
Find out more about our courses at: http://palliumindia.org/courses/
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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.
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They do their best!
We’d like to leave you with two blogs by visitors to Pallium India, about our clinical staff during home visits. Both articles were published as guest posts to Dr Ann Broderick’s blog.
The first is by Dr Sheetal, an internal medicine physician who is in the initial stages of developing a Geriatrics and Palliative Care Program at Kasturba Medical College in Mangalore. She joined Pallium India for a week of shadowing. She writes about going on a home visit with Soman, a palliative care assistant, and nurse Seena.
The second blog is by Allie Weis, one of the students from University of Iowa who visited India for their India Winterim program. She writes about nurse Dinu: “Poised, confident and competent”
It is all about love and care!
posted by palliumindia in Newsletter