January 2018 Newsletter
“Exceptionally abled” would be more like it. They are achievers battling the odds that an insensitive society offers them.
On December 3, International Day of Persons with Disabilities, a celebration of talents of the differently-abled was held at Manaveeyam Veethi, Thiruvananthapuram. The program was organized by Pallium India in association with the Manaveeyam Theruvorakuttam, the All Kerala Wheelchair Rights Federation (AKWRF) Thiruvananthapuram unit and Cheshire Home. Please come along next time and see the amazing talents – Rajesh singing like an angel, Jyothi the poet reciting his own poetry, and a lot, lot more.
And they had fun too. More than 40 wheelchair users participated in art and sports events including wheelchair race.
Officials of AKWRF, Sindhu Sudevan (President) and Binu Salam (Treasurer) were among the participants.
Read the report in The Hindu: Differently abled reaffirm right to live with dignity
Geetha (not her real name), 57 years old, spends her days in a wheelchair – she has been suffering from spinal muscular dystrophy, diabetes mellitus and hypertension since 2003. Now, she can move her upper limbs to some extent, but is completely dependent on others for almost all her activities of daily living.
Financial constraints due to out-of-pocket expenditure and separation from spouse have added to her agony. She lives with her only son, who is a daily wage earner.
With the Kerala government’s disability pension of ₹1000 per month and financial aid to build a house, she has begun construction of a house; however she needs financial assistance to complete it.
Geetha and her son had been living in a shed. Realising that the shed would not withstand the rain, they had to move to their incomplete house.
What can you do?
You can help Geetha attain her dream of a house of her own: with wheelchair-friendly living room, bathroom and kitchen.
This will be the greatest gift you can give a woman who has to live the rest of her life in a wheelchair: a certain amount of independence, and dignity.
Please donate and make Geetha’s dream a reality. http://palliumindia.org/donate/
To know more, please contact us: email@example.com / 9746745502
Inadequate attention to mental illness seems to be a global phenomenon, as you can read in Atkin et al. BMC Palliative Care (2017) 16:69. Anxiety is one of the major issues that are frequently ignored or inadequately addressed.
Despite the lack of adequate evidence, all clinicians in palliative care need to note: “Australian guidelines provide the most specific recommendations regarding medication, advising selective serotonin reuptake inhibitors (SSRIs) as first-line pharmacotherapy and advising against benzodiazepine use due to risk of dependence, tolerance and other morbidities including confusion, ataxia, falls in the elderly and rebound anxiety and advise limiting benzodiazepines to crisis situations, including palliative care” (Butow P, Price MA, Shaw JM, Turner J, Clayton JM, Grimison P, et al. Clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients: Australian guidelines. Psychooncology. 2015;24:987–1001.)
Thank you Barry Ashpole and Media Watch for bringing our attention to this publication.
The Union Cabinet of India has approved the draft National Medical Commission (NMC) Bill, which seeks to replace the existing medical education regulator Medical Council of India (MCI) with a new body to ensure transparency. Currently, the MCI is the statutory body for establishing uniform standards of medical education in India, but, with introduction of this draft bill, MCI will be replaced with a new Commission. The bill provides for the constitution of four autonomous boards entrusted with conducting undergraduate and postgraduate education, assessment and accreditation of medical institutions and registration of practitioners under the NMC. The draft bill proposes a common entrance exam and licentiate exam which all medical graduates will have to clear to get practicing licences, an official said.
Why is it that there is so little discussion in India on access to palliative care, while there seems to be so much talk about euthanasia? Is that an unthinking reaction, or are we deliberately saying “We have no time relieve your pain; come, let us discuss whether we can kill you” ?
Pope Francis has advised doctors to avoid “overzealous treatment” of patients at the end of life, saying that “burdensome” treatment may not be in the bests interests of the person.
Addressing the World Medical Association European Regional Meeting on End of Life Questions — a conference jointly organised by the World Medical Association, the German Medical Association and the Pontifical Academy of Life — the Roman Pontiff said that that the development of powerful medical technologies calls for prudent discretion on the part of clinicians:
“greater wisdom is called for today [in end of life care], because of the temptation to insist on treatments that have powerful effects on the body, yet at times do not serve the integral good of the person”.
The Pope broached the much discussed topic of “overly burdensome treatment”, and discussed a series of ethical principles outlined by his predecessors Pius XII and John Paul II.
“…in the face of critical situations and in clinical practice, the factors that come into play are often difficult to evaluate. To determine whether a clinically appropriate medical intervention is actually proportionate, the mechanical application of a general rule is not sufficient. There needs to be a careful discernment of the moral object, the attending circumstances, and the intentions of those involved. In caring for and accompanying a given patient, the personal and relational elements in his or her life and death – which is after all the last moment in life – must be given a consideration befitting human dignity. In this process, the patient has the primary role.”
Roman Pontiff’’s comments follow a statement earlier this year from the Pontifical Academy for Life on the controversy surrounding British infant Charlie Gard. In the statement, Academy president Vincenzo Paglia said:
“The proper question to be raised in this and in any other unfortunately similar case is this: what are the best interests of the patient? We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.”
This blog was originally published here: https://www.bioedge.org/bioethics/care-vs-overzealous-treatment-pope-francis-speaks-on-end-of-life-issues/12532
“Supportive and palliative care interventions should be integrated, dynamic, personalised and based on best evidence. They should start at the time of diagnosis and continue through to end-of-life or survivorship.”
The position paper by Jordan K et al published as a special article in the Annals of Oncology dated Dec 8, 2017 highlights the evolving and growing gap between the needs of cancer patients and the actual provision of care. The concept of patient-centred cancer care is presented along with key requisites and areas for further work.
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: firstname.lastname@example.org.
Dr E. Divakaran, founder of Institute of Palliative Care, Trissur, is the winner of the annual award given by Pratheeksha Palliative Care, Koottanad.
Congratulations, Dr Divakaran! Your humility, able leadership and quiet efficiency are a model to all. All of us at Pallium India are proud to be associated with you.
Pallium India announces the winners of Rajam S. Nair Endowment Prize Essay Competition held for students from health care field.
There were several amazing submissions, and the judges had a very tough time deciding the winners! A huge THANK YOU to everyone who participated.
The topic for the write up was the same as the theme of this year’s World Palliative Care Day: “Palliative Care and Universal Health Coverage: Do not leave those suffering behind.”
Prize distribution is on 23 February 2018 at 25th IAPCON at Jawaharlal Nehru Auditorium, AIIMS, New Delhi.
These are the top three winners. Congratulations!
Something beautiful is evolving near Nedumbassery in Ernakulam district, Kerala. Guardian Angel, a new palliative care centre is opening its doors to the needy in Jan 2018.
Most palliative care centres face many teething troubles, shortcomings and hindrances during its early days, but not Guardian Angel. With the vision of an exceptional human being, His Grace Mar Severios and with the more-than-capable management of His Grace Mar Eulios and a very willing volunteer, Mr Chinnan, the centre starts with two trained doctors, several trained nurses and enough physical facilities. We predict that this is going to be an important institution in palliative care delivery and training in the state.
Best Wishes, all at Guardian Angel. Pallium India is proud to walk with you at least a few steps in your development.
What I learnt from my experience is that while the technical things matter, what matters most of all is the art of medicine. Ranjana Srivastava is an oncologist, award-winning author and columnist for The Guardian. She was awarded the Medal of the Order of Australia for her work on doctor-patient communication.
Mathukutty J. Kunnappally, author and former editor of Sahayatra, sadly died on 26th December 2017. Mathukutty J. Kunnappally had helped Pallium India at a critical time when it needed expert help. He took on the task as a volunteer. Today, Sahayatra continues to follow many of the reforms that he had brought in.
At this time of sadness, we gratefully remember his generosity and voluntary service for the suffering people in our country.
(Image source: Destination Kerala)
Joseph Pulikkunnel, a palliative care pioneer in Kerala, sadly died on 28 December 2017.
In 1982, Mr Pulikkunnel started what could be called a fore-runner of a palliative care service. He felt the need and started looking after people with incurable diseases, particularly people with poorly controlled diabetes and incurable cancer. In the 1990s he got professionals trained and developed it as a modern palliative care service. We pay obeisance to the departed soul.
Read: A rebel with a cause
India’s apex medical research organisation will notify next month the conditions under which doctors can withdraw life-sustaining treatment for terminally ill patients.
Once notified, the Indian Council of Medical Research’s (ICMR) new glossary will become a reference point for doctors in determining limitation of treatment and providing palliative care at end of life.
“The neighbors describe how anxious they would get whenever they heard Mrs. Amutha, a 70-year-old lady, as she banged her head on the walls of her apartment and screamed. She suffered from severe headache and facial pain caused by advanced stages of oral cancer, and this is how she dealt with it.”
Growing up as the daughter of Dr Subathra Muthukumaran, a palliative care physician in Chennai, Krithika Muthukumaran was familiar with the challenges arising from unavailability of pain medication and lack of awareness of palliative care. When she moved to Canada for higher studies, she was shocked to find the contrast in opioid situation in opposite sides of the globe. “North American and European nations are struggling to cope with the side effects of opioid misuse, while the remaining population does not have access to opioids to alleviate pain and suffering.” She explores the origin of this chasm, and discovers why opioid prescription overshot the intended use in countries like USA and Canada. “A new strategy and possibly bringing in uniform operational guidelines worldwide for the next set of doctors will greatly help them approach pain with the right mindset and prevent the past errors,” she concludes.
Read the article: Opioid crisis: A global rethinking
New York Times
Uganda has a strategy for giving scarce morphine to patients in pain. But many poor nations won’t emulate it, over fear of an opioid epidemic.
Pain is only the latest woe in John Bizimungu’s life.
Rwandan by birth, he has lived here as a refugee since his family was slaughtered in the 1994 genocide. A cobbler, Mr. Bizimungu used to walk the streets asking people if he could fix their shoes.
Now, at 75 and on crutches, he sits at home hoping customers will drop by. But at least the searing pain from the cancer that has twisted his right foot is under control.
“Oh! Grateful? I am so, so, so, so grateful for the morphine!” he said, waving his hands and rocking back in his chair. “Without it, I would be dead.”
Pallium India invites applications for the post of Programme Coordinator at Trivandrum.
No. of vacancies: 1
Nature of Job: Permanent – Full Time
Location: Pallium India Trust, Arumana Hospital Building, Trivandrum
- Overall in-charge for Pallium India coordinating between Pallium India & IACA & all training centers involved in the IACA project.
- Ensure intimation about the course to all palliative care centers, Medical Colleges and cancer centers in the country through telephone and emails and /or advertisements & publications.
- Prepare details of all applicants for the course & submit it to the review committee.
- Review & ensure proper documentation regarding resume of staff, documentation of expenses & progress of partners in various centers involved in the project.
- Prepare & ensure proper documentation of all activities associated with the project and proper dispatch of quarterly and annual project report to IACA.
- Liaise with accounts department of Pallium India to ensure proper utilization and documentation of the Grant.
- Visit the individual training centers as and when needed.
- Database management of Pallium India
- Arrange and coordinate travel needs of Project Staff at Pallium India.
Qualification: Any Graduate/Post Graduate from a recognized university with good computer and communication skills and willingness to travel.
Experience: Fresher /1-2 years
How to apply
Interested candidates please send detailed and updated CV to email@example.com with subject as “Application for Programme Coordinator”.
Contact: +91 9746745501 / firstname.lastname@example.org
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 email@example.com. Please mention “Application for Palliative Care Physician – New Delhi” in the subject of your email.
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Unfortunately, patients requiring palliative care are being admitted to hospitals, which shift them to their Intensive Care Units (ICU s) in absence of facilities and trained doctors to deal with such patients in their last stages. This deprives them of a chance to be with their family members before their death.
This is because attendants are not allowed into the ICU.
“Palliative care may be needed by anyone, irrespective of their social and financial status. The poor are making a better choice, though it could be due to financial reasons, when it comes to taking care of such patients. They keep them at home and attend on them,” says Dr. N.S. Raju, managing trustee and medical director of Sneha Sandhya Age Care Foundation.
What will help most of us achieve a good death is a mix of bravery in acknowledging the imminence of the exit, and a candid approach
I have for months carried around in my “to read file of articles”, one that appeared in the Journal of the Royal College of Physicians Edinburgh (2016; 46: 281-7) titled “The way we die now: a personal reflection”. Losing my father, Dr. Krishnamoorthy Srinivas, a medical practitioner of some renown, to the icy hands of death last month, finally made me pick up and read this article by Dr. S.O’Mahony, a gastroenterologist in Cork University Hospital. In the article, which draws on his eponymous book, he talks of the contradictions that exist “in the modern deathplace”.
Nanma, the employee’s charity initiative of Asianet Satellite Communication, donated ₹100,000 to support the 6th anniversary celebrations of Pratheeksha children’s palliative care clinic at SAT hospital. Thank you very much!
Students and teachers of Navajeevan School SANS PAIN (Students Against Needless Suffering and Pain) Unit have donated 250 packets (5kg each) of rice to support Pallium India’s Foodkit program. Thank you very much!
On Pallium India’s 14th annual day (December 15), SBI Life Insurance donated ₹2,44,707 worth of Medical equipment for patient care. It was handed over by SBI Life Area Manager Prince James to Dr Rajagopal. Thank you very much for your support!
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:
- http://palliumindia.org/donate/ (India)
- http://palliumindiausa.org/ (USA)
- Write to us: firstname.lastname@example.org
- Call us: +91-9746745497 (India) / +1-718-273-8597 (USA)
All donations to Pallium India are tax deductible.
- Jan 5, 2018: Extension for Community Health Outcome (ECHO) Season 2. Topic: “Interventional Pain Management: Carcinoma pancreas / chronic calcific pancreatitis” ECHO is an online learning platform through knowledge and experience can be shared. For details and to register, visit: http://palliumindia.org/courses/echo/ Contact: email@example.com
- Jan 15, 2018: Kerala Palliative Care Day, programs are organized throughout Kerala by palliative care enthusiasts.
- Jan 17, 2018: Foundation course for doctors (Reserved for doctors from Government health service, Kerala)
- Jan 19, 2018: Extension for Community Health Outcome (ECHO) Season 2: Head and neck. Visit: http://palliumindia.org/courses/echo/ Contact: firstname.lastname@example.org
- Jan 31, 2018: Foundation course for doctors (Reserved for doctors from Government health service, Kerala)
- 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: email@example.com / firstname.lastname@example.org
- 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: email@example.com 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: firstname.lastname@example.org / 8589998760
- Apr 23, 2018: 10-day Foundation course for doctors at Trivandrum. Contact: email@example.com / 8589998760
- 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/
Pallium India’s Facebook page has over 7500 Likes.
We regularly post articles related to palliative care from around the world.
We’re also on Twitter: @palliumindia
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.
Telephone: +91-9746745497 or E-mail: email@example.com
Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum
For more details, please visit: http://palliumindia.org/info-centre/
Mr Sandip Jariwala, from Pleasanton, CA, USA writes:
Relief From Cancer’s inaugural charity golf tournament was held at the Los Lagos Golf Course in San Jose, CA, on Friday, September 22, 2017. The tournament attracted 82 golf players and several sponsors who supported the fundraising event to help cancer patients and their families through donations to various nonprofit organizations in India and the US.
The charity golf tournament event was organized to raise awareness and funds for CanKids in New Delhi, St. Jude India Child Care Centers in Mumbai, Pallium India in Trivandrum, Indo-American Cancer Association in Houston, National Pediatric Cancer Foundation in Tampa, FL, and Asian American Donor Program in Alameda, CA.
The event began with a bone barrow registration drive conducted by the Alameda-based Asian American Donor Program (AADP) followed by lunch, golf, dinner reception and awards ceremony. The event ended with a raffle. Sandip Jariwala, founder of Relief From Cancer, highlighted facts relating to the gaps in providing access to quality medical care for cancer patients in India and the hardships their families go through.
Dr. Jerina Kapoor, associated with Stanford University Health Care, represented Pallium India at the charity event and highlighted the need for providing palliative care and pain medication to cancer patients in India and the important work that remains to be done for bringing awareness and training staff in providing palliative care at hospitals in India.
Volunteers from Relief From Cancer will be present at other community events in the Bay Area, including Sevathon and Tiecon, to increase awareness about the needs of cancer patients and their families in different parts of India and to illustrate how the nonprofits there are actively working to provide help as a result of donations received from the USA. To volunteer or make a donation, please write to firstname.lastname@example.org or call (510) 381 7221.
posted by palliumindia in Newsletter