Published on: November 4, 2019

Dear Friends,

12th Oct marked this years’ World Palliative Care Day. Pallium India celebrates this day as an annual event by dedicating it to patients and their families. This year the event titled “Kanivu 2019” (meaning compassion) was sponsored and conducted by The Institute of Hotel Management and Catering Technology, Kovalam (IHMCT) with the whole-hearted support of their students and staff.

The theme this year is “Palliative Care: My Care, My Right”. The management, students and staff of IHMCT became so sensitized to the cause of palliative care that they went beyond the theme to reaffirm that “If your Care is your right, then it equally becomes my responsibility to give you that Care”. The event witnessed the highest degree of professionalism in planning and execution to the minutest detail by the students led by Shri.Rahul and the staff, prominent among them being Ms. Jolly Joseph, HOD. Considering that they needed to cater to a crowd of 520 that included patients (188), their caregivers and family members, staff and volunteers of Pallium India, this was indeed a daunting and mammoth task by sheer scale. The hospitality and dedication displayed by the students especially and the staff was to be seen to be believed. The degree of hospitality demanded special attention to some of the patients and the students satisfied that requirement in ample measure.

The event was inaugurated by Shri. S.M.Vijayanand (IAS), former Chief Secretary, Govt of Kerala, who was the chief guest, felicitation was by Shri.Rajashekhar, Principal IHMCT, Shri.Sree Kumar Muttacaud, IAPC Secretary, Shri K.Sivadasan Nair, President, TIPC. The event compered by Vyshnavi of Pallium India began with a prayer and lighting of the lamp followed by an ice-breaking session of games organized by the students separately for the patients and their caregivers. This was followed by songs and dances performed by the students of IHMCT who delighted the audience with their excellent performance. Rajesh Kuttichal (a person with paraplegia), a gifted singer who enthralled the audience with his superb renditions stole everyone’s heart. The excitement created by the scintillating songs carried the students, volunteers and staff of Pallium India on to the stage to ventilate their joy by dancing to the songs. The patients and their families too enjoyed the entertainment on display, letting go of their inhibitions, taking part in games and having heart-to-heart conversations with their friends who they only got to meet on such occasions. The staff and volunteers of Pallium India who manned the registration counters and were available for help had little to do as all aspects were diligently taken care of by the students.

The Pallium India visual and print media awards were given away at the occasion by Shri Vijayanand.

The students had taken care of the hungry stomachs by their culinary delights offering a wide variety of mouth-watering veg meals (25 items to be precise that included 3 salads and 3 desserts) to suit every taste bud. Tea and snacks were served during the morning and in the evening.

The event ended on a highly successful note with a Vote of Thanks by Shri.Babu Abraham of Pallium India. The students, staff and Management of IHMCT have by their uncompromising support for palliative care proven themselves to be a responsible and highly sensitized citizens to this noble cause and thus joined the torch bearers of their generation. The world needs many more of them.

The patients carried home beautiful memories of this annual day out with them and it won’t be long before they yearn for the next one to arrive soon. We look forward to that day too with pleasure.

This report was prepared by Pallium India’s volunteer, Krishnaraj Nambiar. More photos of the event can be found here: https://www.facebook.com/pg/palliumindia/photos/?tab=album&album_id=3685806898112029

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MASCOM and Sheela Jaywant win Pallium India’s media awards

On World Palliative Care day hosted by the Institute of Hotel Management and Catering Technology at Kovalam, Shri Vijayanand IAS, former chief secretary of Kerala gave away Pallium India’s visual and print media awards, comprising a purse of ₹10,000 each.

Manorama School of Communication got the award for their work named “Healing Hands” in the “visual” category. In the print category, Sheela Jaywant who works in the field of education in rural Goa got the award for the article “Stretching the end”. Sarvesh from Goa, student of IHM, received the award on behalf of Sheela Jaywant.

Click here to view the award-winning video: Healing Hands

Click here to read the award-winning article: Stretching the End

Usha S Nair, Dr T Suresh Kumar and T C Rajesh formed the jury for the print media award. Bina Paul, Sathish Babu Payyannur and T C Rajesh were the members of the jury for the visual media award.

Giving away the awards, Shri Vijayanand said that palliative care cannot be given by professionals alone. The participation by the community and palliative care with love are at the heart of the care system.

More than 180 patients cared for by Pallium India, their families and palliative care workers took part in the event.

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Hippocratic is now on Amazon Prime Video

Great News! “Hippocratic – 18 Experiments in Gently Shaking the World” is now available on Amazon Prime Video in the UK, USA and Canada. Amazon offers a one month free trial on their platform, which means it can be viewed for free for a month.

Please watch and spread the word! https://www.amazon.com/Hippocratic-Mike-Hill/dp/B07DVRYMGK

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IAPCON 2020

The 27th international conference of the Indian Association of palliative care will be held at Guwahati, Assam from 14-16 February 2020, with pre-conference workshops on February 13th.

Dr Dinesh Goswami chairs the organising committee with Dr Arun Deka as organising secretary, Dr Sushma Bhatnagar chairing the scientific committee and Dr Sanghamitra Bora co-chairing it.

Rumour has it that the Filmfare awards ceremony will happen in the same city on the same day.

Better register early and book your accommodation NOW.

Also, please note that the Abstract Submission last date has been extended to 30 November 2019.

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Drugs involved in drug overdose deaths

With about 60,000 people dying every year from opioid overdose, the Opioid Crisis in the USA is casting a shadow on access to pain relief as well as on management of dependence to opioids. General perceptions about the issue seem to be more sensationalist rather than based on facts.

What are the drugs in question? Are they illegal drugs in the market which are not available for medical use, like heroin? Or are they pain medications? If the latter, are they prescribed opioids (legally prescribed and diverted)? Or are they illegally accessed prescription opioids – meaning, drugs which are among those prescribed by doctors but which are also available illegally?

The recent data from Center for Disease Control and Prevention of the United States of America sheds light on this.

Most importantly, it is a mix. A prescription opioid, Fentanyl, and an illegal drug (in USA), heroin, are among the most common.

The following is a list of medicines that cause the most deaths. Note that Gabapentin is one of them.


Click on the image to enlarge

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Conference on women’s cancer at Tata Memorial Hospital Mumbai

Pallium India Chairman, Dr M.R.Rajagopal writes:

It was a great honor for me to deliver the Dr Ketayun Dinshaw oration at Tata Memorial Hospital on 19th October, 2019. Not only because of the great person – Dr Dinshaw – in whose name the oration was. Not only because of the superlative words that Dr Jayita Deodhar used in her introduction. And not only for the critical mass – the elite audience. But also because of the two people who took the chair.

Dr Lucito D’Souza

One was Dr Lucito D’Souza, the onco-surgeon who brought palliative care to India first. In 1986 he opened the first modern hospice in India, the Shanti Avedna Sadan. Another one in Goa and a third one in Delhi followed. The palliative care scene in India today stands on the shoulders of this great visionary.

The other was Ms Devika Bhojwani, a humanitarian who started the Women’s Cancer Initiative with Dr Dinshaw a decade and a half back. The relevance of this initiative can only be understood if one remembers the poor access and inequity of health care as a whole in India, which would tell us how much vulnerable people suffer. Women are discriminated against in the country, having less access to healthcare anyway and not infrequently abandoned when they are ill. This exceptional initiative, I hope, will pave the way for all of us to make sure that the care that we give and the services that we develop are equitable. And that the most vulnerable and the most needy are not abandoned.

Thank you Dr. Santosh Menon, Dr Jaya Ghosh and Dr Lavanya for giving me this opportunity.

By the way, if you want to go a bit deeper into the history of this beginning of palliative care in India, you can read Dr D’Souza’s article in “Today’s clinician” published from Goa on 12 October 2019. The publication also carries articles by Anne Mattam, D Nevisa, B. Schmidt and D.A.N.Mascarenhas, Vidya Viswanath, A.S.Chagla, P.P.D’Souza and T.Narayan.

Also read: The Caregivers’ suffering remains mute, writes The Hindu
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Palliative care grid in Kerala soon: Health Minister

The government is in the process of setting up a palliative care grid in the State by involving all major stakeholders, NGOs and activists in the sector so that an integrated approach to delivering palliative care can be adopted, Health Minister K. K. Shylaja has said.

Read More in The Hindu: https://www.thehindu.com/news/national/kerala/palliative-care-grid-in-state-soon-minister/article29814548.ece

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Obituary: T M Balan Nair

Mr T. M Balan Nair, one of the first few volunteers of the pioneering Pain and Palliative Care Society in Calicut from the year 1994, a strong pillar of the community oriented palliative care movement, passed away at the age of 85.

For a long time, he chaired a sister organisation which was aimed at supporting rehabilitation of palliative care patients and families. His contributions to palliative care not only in Calicut, but in Kerala, were substantial.

We join his family in their grief.

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Pallium India at the Airtel Delhi Half Marathon

Dr. Satendra Singh, a friend of Pallium India, was among the 25 participants to represent Palliative Care at the Airtel Delhi Half Marathon held on 20th October 2019. Dr. Satendra, an Associate Professor of Physiology at University College of Medical Sciences & GTB Hospital, Delhi, is the first ever Indian to win the prestigious Henry Viscardi Achievement Awards given to extraordinary leaders in global disability community.

Among the runners were Dr. Girish Tyagi (President of Delhi Medical Association and Secretary of Delhi Medical Council), students of University College of Medical Sciences, Delhi, employees from ICMR, Safdarjung Hospital to name a few. Around 40,000 people participated in the event with the aim of supporting various causes.

The participants expressed satisfaction and excitement at the opportunity to run for a noble cause like palliative care and were determined to work more towards improving access to Palliative Care in whichever way they can.

Pallium India was supported in the Airtel Half Marathon 2019 by Power Grid India.
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A screening tool for Serious Health-related Suffering: please comment.

Would it not be great if every person who enters a hospital were assessed not only with a view to diagnosis and treatment of the disease, but also identifying elements of suffering and treating them?

Like pain, breathlessness or other physical symptoms?

Like depression, anxiety or other emotional suffering?

Or social issues like problems of relationship, role in the family, stigma against the disease?

And would it not be absolutely great if the person’s financial position (including debts) were taken into consideration before planning treatment? Then the person is less likely to abandon the treatment half way through. And we could possibly avoid the financial destruction of families by catastrophic health expenditure.

A task force that met at the venue of National Cancer Grid meeting had agreed on creation of a tool for assessment of Serious Health-related Suffering which could be done in cancer hospitals right on the day of first appearance of the patient in the hospital – taking in the spirit of the World Health Assembly resolution of 2014 for integration of palliative care with all health systems, at all levels, across the continuum of care.

The SHS tool is put up on NCG website: https://tmc.gov.in/ncg/index.php/activities-ncg/palliative-care/tools

The NCG and the task force would very much like to have your comments. Submit your responses here https://forms.gle/T8A9AcHnic5sYkci7

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Food Festival 2019

Pallium India’s volunteers and staff organized a food festival on Oct 4 and 5, 2019 to raise funds for patient care activities. Mouth-watering delicacies were prepared at home by volunteers. The demand was huge; the items were sold out early. We thank everyone who visited and supported our cause.

Read the news report in The Times of India: https://timesofindia.indiatimes.com/city/thiruvananthapuram/food-fest-raises-rs-1-8l-for-palliative-care/articleshow/71460325.cms

More photos can be found on Pallium India’s Facebook page.

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Medical stigmatisation of LGBTIQ people: An interview with Dr Sameera Jahagirdar

Medical textbooks in India have been found to contain outdated principles citing homosexuality as a pathological disorder. Such information could be enshrining this way of thinking into a new generation of doctors, leading to poor health outcomes in the LGBTIQ community as a result of discrimination.

Read more: https://www.healthissuesindia.com/2019/10/23/medical-stigmatisation-of-lgbtiq-people-an-interview-with-dr-sameera-jahagirdar/
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Meet two achievers

Dr Rajagopal, Chairman of Pallium India, who was one of the speakers at TEDx CUSAT on September 28, 2019, writes:

Meet Nitin Vasanth, a young pioneer and innovator, the winner of an award from the President of India, and one of the speakers at a TEDx event at Cochin University of Science & Technology (CUSAT), Ernakulam on 28th of September, 2019. Nitin’s talk was enthusing – a story a bit like Steve Jobs’, one of academic mediocrity as a student and a later one of excellence in performance, of aiming for the stars that one focuses on, of innovations and of success.

But this story is not about any of his professional or academic achievements. (For those, you can look up this news in the Times of India: CUSAT graduate’s innovative attempt gets lauded at the Rashtrapati Bhavan.) This story is about one of his major achievements as a human being.

This is also the story of Paru Amma.

When a student of CUSAT, Nitin would see an elderly woman sweeping the streets – practically the whole campus, single-handed. True, there were others also at the job; but it seemed to Nitin that Paru Amma did more than all of the others combined. She appeared really old to him – in the 70s – and how could she be working so hard?

Nitin being Nitin, went and talked to her. Got her story, found that she had children in the neighborhood but because of one alcoholic son no one was looking after her. That son in a fit of intoxicated anger, had destroyed her house and she hardly had a roof over the head now.

Again Nitin being Nitin, he gave her the promise then and there that he would rebuild that house. He did not know how, or where the money and other resources would come from; but nevertheless he promised. And he found that people were willing to help; in fact, some of them were eager to do so. The usual story: there are always people looking for something meaningful to do. All it takes is someone with the imagination and courage to make a beginning. The house was renovated.

Can I meet her, I asked Nitin. He was clearly happy. The engineering students, our hosts, took us there during our lunch break. We met Paru Amma and saw the house which many students and staff of CUSAT invested their time and efforts in. I take pride in calling her Paru Chechi (older sister).

And in the picture you see Paru Chechi with Nitin Vasanth. Two achievers, one unknown to the world who demonstrated hard work, commitment, resilience and positivity. The other one putting into practice what Mahatma Gandhi said, “The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.”

The event in CUSAT was just ahead of the 150th birthday of Mahatma Gandhi, and remembering that man who has allowed us to live with some pride in ourselves, I salute these two achievers.

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Humanitarian crises and children:

As we are building capacity (intellectual and logistic) to be able to deal with palliative care needs in humanitarian crises, let us share with you a beautiful one-minute video from the organization, “War Child”, sent to us by the organization’s new Humanitarian director, Dr Unni Krishnan.

Please take a moment to watch:

https://youtu.be/tDiwhtcVrbw

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Why Does Palliative Care Matter?

Sophia Zupanc is a young researcher who spent a month with us in Trivandrum, studying our work in palliative care and helping out in every which way she could. Read what she has to say:

As of late, I’ve been spending most of my time asking the individuals around the Pallium India office the same question I’ve been asking individuals all around the world: Why does palliative care matter?

As a 2019 Thomas J. Watson Fellow, I am funded to conduct one year of non-academic, individual research outside of the United States. Watson projects are supposed to reflect the fellow’s deepest passion, and the year to give time to challenge, reinvent, and reimagine that passion’s possibilities. My project seeks to explore how care is provided to individuals with life-limiting and life-threatening illnesses, an endeavor which informed by my interest in palliative care and desire to investigate (without necessarily taking any stances on) the assumptions that unpin the discipline.

Put another way, I’m spending the year focusing on the big question such as ‘What is palliative care?’ and ‘Why does it matter?’

The staff’s responses were highlighted in Facebook and Instagram series ‘Humans of Pallium India.’ From personal anecdotes about a family member’s experience with palliative care to detailing the importance of educational and vocational support programs to Pallium patients, the answers revealed not just the range of personal experiences the staff have with palliative care, but the sheer breadth of services Pallium India provides to its patients.

Even though programs like vocational rehabilitation were not what I used to think of when I envisioned palliative care, after spending nearly a month at Pallium, answers of that nature no longer surprise me.

The World Health Organization defines palliative care as, “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Certainly, physical pain falls under the umbrella of ‘problem associated with life-threatening illness,’ but what about, for example, the emotional suffering resulting from the financial stress an illness may put onto a family? Is that also a problem associated with illness?

Perhaps the question should be posed differently: For an individual who recently became paraplegic, are all of the newfound difficulties she faces navigating everyday tasks considered suffering related to her health status? What about the very real possibility of a child’s tuition fees going unpaid after illness prevents a parent from earning?

Maybe addressing these questions first requires to define what falls under the domain of ‘problem associated with life-threatening illness.’ However, regardless of how it is defined, I believe it is near impossible to ignore the downstream impacts of life-threatening illness—the children, families, and futures that it can mercilessly take with it.

When I reflect on the questions that inspired this journey, my answers are now less certain. The formal definition of palliative care may be useful when thinking theoretically, but the actuality of palliative care differs depending on the needs of the individual and capacities of the organization providing care. Palliative care is symptom management, pain relief, and psychosocial support; it is also helping individuals navigate life after a diagnosis and supporting families in various aspect of that adjustment process.

What palliative care is depends on what the individual needs, and it is precisely because palliative care can depend that it matters so much.

Before being named a 2019 Thomas J. Watson Fellow, Sophia worked in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Institute and as a hospice volunteer while completing her undergraduate education at Wellesley College. Sophia can be found on Twitter @SophiaZupanc. She is chronicling her travels at www.peripateticpalliation.com
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Dr Sanjeev Arora wins Lifetime Achievement Award

Project ECHO founder Dr Sanjeev Arora has been selected for the Lifetime Achievement Award at the Governor’s New Mexico Distinguished Public Service Awards 2019.

The award is in recognition of his work in developing a model to deliver and extend equitable healthcare and other critical resources to the world’s most vulnerable populations. Project ECHO is currently operating in 40+ countries with the help of 300+ academic partners.

This comes close on the heels of the news that US senators have written to the Secretary of Health and Human Services supporting the ECHO model. Perhaps, there is a lesson here for us all regarding advocacy?

Here on the other side of the globe, we at Pallium India are very grateful to ECHO international for the all the progress that we have made in the educational sector by using the ECHO platform. Our heartiest congratulations to Dr Sanjeev Arora and his team.

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Video of the Month: Pallium India featured in KBC

Thank you, Sony TV, for including Pallium India’s work in your exceptionally-popular program “Kaun Banega Crorepati” on the 1st of October, the eve of Gandhi Jayanti. Your “Karamveer” program enabled us to help several people who came to us seeking help. We were able to direct them to the right institutions that are willing to look at serious health-related suffering and to do something about it. And one philanthropist has offered to set up a chain of palliative care institutions in a cosmopolitan city.

Watch the video: https://youtu.be/Zyk_ygHFV_Q

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Donate to Pallium India

The money you give will pay for essential free medicines for the poor, for their travel to the clinic or for schooling of their children, or other forms of care.

Please give whatever you can. No amount is too small.

To donate, please visit:

https://palliumindia.org/donate/ (India)

http://palliumindiausa.org/ (USA)

Write to us: info@palliumindia.live-website.com

Call us: +91-9746745497 (India) / +1-718-273-8597 (USA)

All donations to Pallium India are tax deductible.

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Upcoming Events

Have Queries? Write to: info@palliumindia.live-website.com.

Find out more about our courses at: https://palliumindia.org/courses/

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Join Our Facebook Page

Pallium India’s Facebook page has over 9000 likes.

We regularly post articles related to palliative care from around the world.

Click here to Like our page!

We’re also on Twitter: @palliumindia and Instagram: palliumindia

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Palliative Care Training Program at Delhi

Radhika Kumar, a volunteer from Vasundhara Enclave, New Delhi, writes:

“If you want others to be happy, practice compassion. If you want to be happy, practice compassion.” – Dalai Lama

We, a group of residents of Vasundhara Enclave, New Delhi, celebrated World Hospice & Palliative Care Day by organizing a 2-day “Volunteer Training Program” to a group of 15 volunteers, under the banner of Pallium India on 12th & 13th Oct 2019.

The event was kick-started with an inspiring welcome message from Dr. M. R. Rajagopal, chairman of Pallium India, through pre-recorded video. We all were motivated by his words.

This was followed by sessions on Introduction to Palliative Care, Community Participation, Grief & Bereavement, Home-Based Care, Communication Skills, End of Life Care, Basic Nursing Skills, Role Plays, Real Life Experience and Group Discussions, which were conducted by the very experienced, motivating and encouraging team representing Pallium India, comprising Dr. Mary Abraham, Dr. Parul, Ms Kathleen and Dr. Saima. The co-ordinator of the training program, Ms. Nandini Jayaprakasan had taken care of each and every thing (right from a place to conduct the program to arranging drinking water, food, tea etc.) to make us comfortable and enable us to concentrate on the training.

Most of us were not even aware of the term Palliative Care. After attending the training, we could comprehend in depth the meaning of the word Caring. The passion for giving care and accepting care from someone is hidden in our hearts. A few kind words and positive attitude can change someone’s perception towards life – this was one of the big learnings of this program. They have the power to ease pain in patients and caregivers. “My Care, My Right” has to be invoked in the citizens of our country.

We, the Volunteers of Vasundhara Enclave, pledge to walk through the pathways shown by our mentors with a heart full of Care, Compassion and Dedication to support our fellow human beings who are suffering from life-threatening or life-limiting diseases.

Here is some of the feedback we received after the event:

“It was very inspiring to meet the dedicated team of Pallium India – Dr Mary, Dr Parul, Dr Saima and Ms Kathleen. We need to create awareness in society about Palliative Care, and move people from self-centeredness and awaken their humane feelings…” – Nilima Dutt

“The programme was very informative. It helped us understand various concepts and the objectives of palliative care.” – Ambika Menon

“This session was an eye-opener for most of us. It is the need of the hour to spread awareness about palliative care.” – Prasanna Sivadas

“Some points may seem unimportant like taking care of your facial expression, body language, etc. while interacting with the patient. But they are very important. Ms Kathleen has given an insight into these which one may tend to ignore.” – Santha Jayakrishnan

“This training taught me the importance of patience and empathy while dealing with people with illnesses.” – S Radhika

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Online course from Glasgow: Exploring dying and palliative care practice around the world

Free online course organized by University of Glasgow – 4 hours a week x 3 weeks.

End of Life Care: Challenges and Innovation
Explore dying and palliative care practice around the world and evaluate new trends and ideas surrounding end of life care issues.

Visit this link to know more about the course, topics covered, registration, etc. https://www.futurelearn.com/courses/end-of-life-care

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IAHPC Traveling Scholarships to the 2020 ALCP Congress

The International Association for Hospice and Palliative Care (IAHPC) announces Traveling Scholarships to support the travel of palliative care workers to attend the X Latin American Congress of Palliative Care in San Jose, Costa Rica on March 25-28, 2020.

The deadline to apply is December 15, 2019. Results will be announced in early January.

To apply for a Traveling Scholarship,

  • applicants must be IAHPC members in good standing.
  • applicants must be current members at the time of the congress.

Visit the IAHPC website for detailed information about the application process or to fill out an application form.

If you have any questions about how to apply for a Traveling Scholarship, please contact Genevieve Napier, IAHPC Programs Officer at gnapier@iahpc.com.

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1 Year Clinical Fellowship in Pediatric Palliative Medicine at MNJIORCC, Hyderabad

Offered jointly by MNJ Institute of Oncology and RCC and Two Worlds Cancer Collaboration, this one-year integrated international pediatric palliative care fellowship program aims to increase access to palliative care for children in India.

Eligibility

The candidate should have a M.B.B.S degree with permanent registration with Medical Council of India and MD or post graduate diploma in clinical specialty. Preference will be given for post graduate qualification in pediatrics.

How to Apply:

Click here to download the prospectus and application form. Complete it and send it to mnj.palliative@gmail.com

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PARTING SHOT

We asked Ashla Rani, the coordinator of Pallium India’s halfway home and a wheelchair user, how she would like to be referred to; a person with disabilities, differently-abled or divyangjan? Here is Ashla’s response.

People ask me how best they should describe me. “Differently-abled”, “Divyangjan” or “Disabled”.

My response is, “Call me Ashla”. If you insist on an adjective, I prefer ‘disabled’.

I am disabled not because I use a wheelchair.

I am disabled because I cannot access the outside world. I am disabled because buildings around me are built without access for me. Because the pavements, public offices, restaurants and ATMs are not wheelchair-accessible.

I am disabled because you cannot think of me as a contributing citizen of the country.

Calling me differently-abled or specially-abled or divyanjan does not change anything.

Make the environment accessible, your attitude open and welcoming. I shall stop being disabled.

Then I will be just Ashla, another human being like you.

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