‘The Mathura Declaration’ aims to promote Palliative and End of Life Care (EOLC) to those who are terminally ill and dying.
Mathura, Uttar Pradesh, India, 30th April 2017: The newly formed Citizens’ Action Needed for Dignity in Death (CANDID) and a multi professional medical association called End of Life Care in India Task force (ELICIT), bring together, for the first time, individuals from varied walks of life to promote humane and compassionate care of terminally ill and dying persons.
This Advocacy is found to be necessary against the backdrop of inadequate awareness among the public, care-providers and policy-makers, of the complex issues around compassionate and appropriate care of the terminally ill and dying persons that impact every citizen’s life.
Palliative and End of Life Care (EOLC), is about appropriate transitioning from disease-oriented care to symptom management, ensuring comfort in the dying phase.
The Mathura Declaration states the following:
1. Quality of life is a right guaranteed under the Constitution to every citizen of India and must be upheld, including at the end of life.
2. Palliative and End of Life Care (EOLC) are important means to ensure this.
Now that the Parliament of India has passed The Rights of Persons with Disabilities Act, the relevant rules need to be framed. Government of India has prepared draft rules and published it on its website.
On invitation from the Department of Social Justice of Government of Kerala, a few of us from Pallium India including Ashla Rani and Anjali Krishnan, attended a workshop held in Mascot Hotel, Trivandrum, on World Health Day, April 7, 2017. The workshop was inaugurated by the Honourable Minister for Health and Family Welfare, Shailaja Teacher, and was blessed with the erudite analysis of the Act by the former Chief Secretary of Kerala, S. M Vijayanand IAS.
Creation of realistic rules and spelling out the details would be key to proper implementation. We congratulate the Department of social justice for this activity and thank them for including the civil society.
Elisabeth Kübler-Ross Pallium Library inaugurated
“Palliative care must become the responsibility of the entire society towards the needy,” said former Chief Secretary S. M. Vijayanand IAS, while inaugurating the Elisabeth Kübler-Ross (EKR) Pallium Library at Pallium India’s Arumana Hospital building. He also pointed out that India held a dismal place in global Quality of Death index. While the society’s involvement in Kerala’s palliative care scene was commendable, there was still a long way to go.
S. M. Vijayanand added that he was fascinated by Pallium India’s slogan, “Care Beyond Cure” and the motto of palliative care: “low tech, high touch”.
The inauguration of EKR Pallium Library was organized as part of the World Health Day programs on April 7th, 2017. The library is for the use of the trainees as well as for staff members and volunteers. There is a separate section on EKR publications.
Named after Swiss-American psychiatrist and near-death studies pioneer Elisabeth Kübler-Ross, the EKR Pallium Library has a virtual library on the National Cancer Grid.
The Elisabeth Kübler-Ross Foundation and its chief functionaries, Dianne Gray and Ken Ross (Elisabeth’s son), had sent many precious books to us. Numerous books also came in as a gift from Dr.Odette Spruyt of Peter McCallum Cancer Centre, Melbourne, who has been a friend of Palliative Care in India for over two decades; thank you Rotary Suburban of Trivandrum for your kind and precious assistance in arranging the customs clearance of the latter shipment.
Dr Rajagopal, Chairman of Pallium India, writes:
It was a privilege for Pallium India to be one of 8 invited participants at a workshop organised in the Vatican by the Pontifical Academy for Life on 30 March, 01 April, 2017. The Catholic Church’s interest in palliative care is truly gratifying and holds great promise for the future because its healthcare institutions account for 26% of all in the world. If they all incorporate palliative care into healthcare, it could remove a huge burden of pain and suffering particularly in low and low-middle income countries.
The participants had a special treat – we stayed in Domus Sanctae Marthae where Pope Francis stays and ate in the same dining room. Just being able to see him twice a day was a treat considering what an amazing human being he is, having discarded all luxuries that could be associated with the head of one of the most powerful states of the world, and chose to live with common people like us.
And it was truly a privilege to listen to Archbishop Vincenzo Paglio who chaired the workshop. Here are a few pearls from his talk:
- “A person should never be deprived of his/her dignity – even when one may be tempted to suspect that the person is unworthy.”
- “In this world of palliative care, no one is abandoned.”
- “Beware of the dictatorship of “I” – the ego.”
- “Palliere” should not be used like a lid to hide suffering and to walk away.”
- “Ignorance is cruel in this matter. Cultural illiteracy is not acceptable. We have to overcome the guilty silence.”
[Top: Pope Francis / Bottom: Archbishop Vincenzo Paglia]
Do we really appreciate what all it takes to ensure that you and I have access to pain relief when we need it?
Well, among many other things, sustained advocacy at the international level as well as at the national level in numerous countries.
Ms. Katherine Pettus, advocacy officer at the International Association For Hospice and Palliative Care (IAHPC) writes in the April issue of IAHPC Newsletter:
“The March advocacy highlight was the annual meeting of the Commission on Narcotic Drugs (CND) in Vienna, which also happened to be the 60th anniversary or ‘Diamond Jubilee’ of the CND. For many of us involved in advocacy, especially those who work on improving access to controlled medicines, this meeting marked a banner year, coming after the historic 2016 United Nations General Assembly Special Session (UNGASS) meeting on drugs last April. Like couples who have survived and matured through sixty years of marriage, the Commission can celebrate its maturing relationship with civil society organizations that have worked tirelessly over recent decades to change the focus of international drug policy from a punitive, criminal justice oriented approach, to one that is person-centered and that prioritizes public health outcomes such as improved access to medicines for pain and palliative care.”
You can read the full report here.
Dr M. R. Rajagopal, Chairman of Pallium India, writes:
Some people make you feel so humbled! Dr Odontuya Devaasuren is one such.
Thanks to a leadership development course conducted by Dr Frank Ferris and team in San Diego, California, and Columbus, Ohio, I had the good fortune to spend a few weeks with and to make friends with this amazing source of energy.
While a medical student in Leningrad, she had to witness her father suffering from lung cancer back in Mongolia. Later, her mother-in-law also died in suffering from liver cancer.
But this exceptional woman made great good come out of her father’s and mother-in-law’s suffering. She brought palliative care to Mongolia. She worked hard, forcefully and persistently, to bring in changes in government policies. Some policies were downright crazy. In a country where food had to be rationed, the ration included two bottles of vodka every time!
But Odontuya was so successful in changing policies and in influencing medical education that in 2015, Mongolia came 28th among 80 countries in the Economist Intelligence Unit’s “Quality of Death Index” (though it is only a low-middle income country, coming 124th among world nations in gross national income). Compare that with India, another low-middle income country, listed as 67th out of 80!
Read this article by Andrew North, friends, and join me in saluting the compassionate fighting angel, Odontuya Devaasuren.
[Photo: Dr Odontoya Devaasuren during the leadership course at Columbus, Ohio]
Very sad loss! We lost Art Lipman, editor of the Journal of Pain and Palliative Care Pharmacotherapy, with whom we collaborated on the “Narratives” feature in that journal, to Myelofibrosis on 23 April 2017.
It was a pleasure to work with you, dear Art. Rest in peace!
TNG Award acceptance speech by Dr M. R. Rajagopal (with English subtitles):
Dr Rajagopal explains the significance of palliative care and how everyone can support it.
By Malaka Gharib, NPR.org
Morphine. It’s why Zubair in Kerala, India, can ride his motorcycle, work at his coffee shop and bring an income home to his family. Without his daily dose, living a normal life is nearly impossible.
“The pain is like someone stabbing you with a needle on your body and joints,” he says of his life after being diagnosed with a bone tumor in 1979. Since then, he’s had to have a series of progressive amputations below his right knee.
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: palliumindia.org/donate
Write to us: email@example.com / 9746745497
A video shared by End of Life Care India on YouTube is bringing Netizens to tears, as a handful of elders crack jokes with beaming smiles and put up a funny act about their medical conditions and the irreversibility of it. The clip has four elders trying their hands at stand-up comedy, while they bravely joke around about death.
“Honest and open conversations with the dying should be as much a part of modern medicine as prescribing drugs or fixing broken bones. A better death means a better life, right until the end.”
An article published in The Economist on 29 April, 2017, titled “How to have a better death” explores how death and the dying process have changed over the course of the century. Chronic illnesses, followed by long confinement in the Intensive Care unit, have become common. Some even undergo surgery in the last month of their life.
“To give people the death they say they want, medicine should take some simple steps.” Read the complete article: How to have a better death
By Dr Rajeev Jayadevan, ManoramaOnline.com
As she went out with her friends for dinner, it suddenly dawned on everyone. There was no ramp leading up to their restaurant. Only steps. Her wheelchair could not walk up steps. She either had to be physically carried up the steps, or they could look for another place with a ramp – which probably didn’t exist.”
This is my recollection of a passage written by Ashla, a beautiful young woman – articulate, educated and gainfully employed. There was just one problem: she could not move her legs, and spent a lot of her life on a wheelchair.
She did not want to burden her friends or the hotel waiters into carrying her inside the restaurant.
If only there was a ramp!
Why did we, a civil society, leave her out?
Certificate Course in Essentials of Palliative Care (CCEPC), conducted by Indian Association of Palliative Care will begin on 1st June 2017, at Arumana Hospital Building, Perunthanni, Thiruvananthapuram.
It is a basic course in Palliative Care for Doctors and Nurses. This course aims to inculcate the principles of palliative care to improve patient care through proper communication and effective management of difficult symptoms. This program will help doctors and nurses in their day to day professional life.
Who can apply?
Doctors who have successfully completed MBBS/ BDS (including those doing their internship) and Nurses with Diploma in Nursing/ Bsc Nursing
A heavily subsidized course fee of ₹2000/- for doctors and ₹1500/- for nurses
Registered candidates who do not clear the examination in the first attempt will get one more chance to appear in the examination without paying additional fee.
How to apply
CCEPC has two components, Part A and an optional Part B (Hands on Training in Palliative Care)
Part A consists of a contact session of 15 hours followed by 8 weeks of distant learning. This will be followed by an evaluation consisting of theory examination and spotter examination. The examination will be in August 2017.
The candidate also have to submit a Reflective Case History (online submission), which will be evaluated by National Faculty.
Candidate successful in the theory and spotter examination and those who have secured pass grade in the Reflective e Case History will be awarded the Certificate in Essentials of Palliative Care.
Part B, Hands-on Training in Palliative Care, is optional and consists of 10 days Hands-on Training. This should be done at a palliative care unit authorized by IAPC. At the end of the 10 days posting, the candidate has to submit a logbook duly attested by the mentor.
The certificate awarded to candidates who successfully complete the Hands on Training will enable them to apply for license to stock and dispense oral morphine under the Narcotic Drugs and Psychotropic Substances (NDPS) Act.
- Introduction to Palliative Care
- Communication Skills
- Spirituality, Ethics in Medical Practice, Psychological Issues
- Management of Pain and other Symptoms
- Nursing Issues
- Palliative Care in HIV/AIDS
- Care of the Elderly and Paediatric Palliative Care
- Palliative Care Emergencies
- End of Life Care
Contact us: firstname.lastname@example.org / +91918589998760
The 25th Annual Conference of the Indian Association of Palliative Care (IAPCON 2018) will be held from 23rd to 25th February, 2018, at Jawaharlal Auditorium, AIIMS, New Delhi. The theme of the conference is Create, Collaborate and Communicate.
Early Bird registration closes on 30th June, 2017.
Last date to submit abstracts: 30th October, 2017.
For more details on the Conference, please download the brochure.
Sarath Mohan S., Medical Social Worker at Pallium India, writes:
As a social worker, I am still learning about dignity and its importance in human life. My beliefs and ideas about dignity relate to what I have learnt and what I have experienced throughout my life. I would define dignity as a feeling of having one’s human value and worth being acknowledged. It is also associated with autonomy and having control over one’s destiny.
I would like to throw some light on the influence of health care providers in the dignity of a person, through a personal experience. My father was diagnosed with a kidney disease, a year ago. He has diabetic retinopathy and is partially blind too. Now he cannot walk without support. One day, after consultation in a corporate hospital, he was asked to wait outside the room. He waited in a wheelchair for the support staff to come.
No one turned up for a long time. When we – the family members – tried to move the wheelchair, they did not allow us to do so. Their motto was, “We are here to care for you. You do not need to do anything.”
So my father ended up waiting for more than half an hour in that hospital corridor. He has physical limitations which confine him to a wheelchair. But his dignity and self-respect does not have any confinement! I noticed his devastated face clearly because of being hurt and undignified. The same hospital staff, so-called ‘compassionate health care providers’, did not even ask his permission before giving an injection or checking blood pressure. I wonder how these ‘compassionate health care providers’ justify themselves personally and professionally for treating patients without respecting their dignity. This is not just the case of my father, but of many other patients as well.
Anybody working in health care has the prodigious opportunity and a responsibility to think about others’ dignity and how they personally influence the experience of the people whom they care for. Especially from palliative care point of view, maintaining dignity warrants compassion. Seeing a person as a person first is paramount, not just as a diagnosis or a container of diseases. Every person’s self-image and the way in which health care providers see that has an intimate connection. That means, patients and families expect a lot from the health care providers. It is the responsibility of health care providers to meet their needs.
Only after working at Pallium India did I get the big picture of compassionate care and respecting the dignity of a person. Every nursing procedure will be carried out only after a “May I…..?”. Communication of bad news will be always done in empathetic and systematic way. I have seen nurses who speak to apparently unconscious patients before medical procedures and shifting. There is no better way to respect their dignity. In palliative care, we strive to improve the quality of life of patient and families and thereby we are respecting/valuing their dignity. We give a voice to the patient regarding one’s own process of dying, minimizing physical and emotional suffering, respecting their privacy, and caring for them with empathy. We see them as people who are seeking help with a medical concern.
Patients would like to see themselves through health care providers. If they are able to see that, we have done something remarkable to respect and maintain their dignity. Understanding the suffering of others and willingness or a wish to make a difference in people’s life is all what we need to do to value the dignity of that person. So we health care providers should have the desire for that.
I have not come across any better definition of dignity than these great words by Dame Cicely Saunders. Remembering that great lady with huge respect and passion.
“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”
(Image: Sarath with a patient)
Usha does not have much of worldly possessions; she works as a house-maid to a doctor.
Her son sadly died in a road traffic accident two years back. A year later some compensation was paid to her by the insurance company. Usha did not hesitate; she donated a substantial part of it to Pallium India. She had heard about us from her employer.
We thought the matter ended there. But she was back at the time of the second death anniversary of her son, with another donation – what she had saved from her earnings.
Can you not see God in her?
At an elegant and simple function at Bank of India premises in Trivandrum on 15 March 2017, Kul Bhushan Jain (G.M NBG, South), A B Vijaykumar (Kerala Zonal Manager NBG, South), Anil Kumar Jha (Kerala Deputy Zonal Manager NBG, South) handed over to Pallium India a brand new vehicle for our home visit programme.
Thank you, dear friends at Bank of India, for your support and for conveying that we all have a responsibility towards our suffering fellow human beings.
We had floated a request through our social media – Did anyone have an unused laptop to donate?
The experience from the last many years made us reasonably sure that the plea would not go unheeded; that we would get one.
We were wrong. We got three!
- Liliana De Lima, executive director of IAHPC sent a Microsoft Tablet PC all the way from USA through our well-wisher, Dr Chitra.
- Sarah Chandy sent an Apple Laptop through our volunteer, Smriti Rana.
- Aparna Kurian sent an Apple Laptop through our volunteer, Annu Kurien.
They are all in good use now. See the tablet busy in our ECHO (Extension for Community Health Outcome) education program.
Organization: Pallium India
Job Title: Medical Social Worker
No. of Requirements: 2 (Nos.)
Nature of Job: Permanent – Full Time
Qualification: Masters in Social Work (Full-Time) from a recognized university
Experience: Fresher /1-2 years
Place of Job: Pallium India Trust, Arumana Hospital Building, Eanchakkal-West Fort Road, Vallakadavu P.O., Trivandrum
- Evaluation and management of problems of patients and families requiring palliative care with particular attention to social issues.
- Auditing of palliative patient care with intent to identification of problems and bringing up possible solutions to problems to the attention of the administration.
- Taking part in on-going research activities or initiating need based research programs with the approval of scientific committee.
- Liaising with the Government departments for getting Scheme related information for the patients.
- Taking steps to publish reports/data from audits or research programs with the objective of improved patient care anywhere.
- Maintaining regular reporting to superior officials as advised in the contract.
- Attending (first) and organizing (later) educational programs on behalf of Pallium India.
- Maintaining good relations with clients, donors, well-wishers and staff during telephone conversations, email contacts, personal contacts or any other.
Interested candidates can send detailed and updated CV to email@example.com with “Application for Medical Social Worker” as subject. For more details, please contact: firstname.lastname@example.org / +91 9746745501
For more vacancies, visit our Careers page.
PACE, the palliative care club of College of Engineering Trivandrum (CET), organized a one-day workshop on palliative care, on 2nd April 2017. The program was attended by staff and students of CET. Pallium India’s Advocacy Manager, Babu Abraham, HR Manager, Arathy Venukumar, Volunteer Leela Devi, Volunteer Krishnaraj Nambiar and Medical Social Worker Sherin Wilfred, spoke to the participants about the significance of palliative care in today’s society and shared their own experiences. Leela Devi also put forward some suggestions to PACE on how to contribute to palliative care. Dr K C Raveendranathan, Principal, CET, also addressed the audience.
Praveen T A, General Secretary of PACE, described the future plans of PACE, incuding the decision to conduct ward-level survey in Kulathoor division of Trivandrum Corporation for identifying people who need palliative care and support and to provide help.
Dear staff and students of College of Engineering Trivandrum, thank you for your support to palliative care. Your eagerness to help our fellow human beings excites us.
That is the first organic vegetable harvest from the roof-top of Pallium India’s Trivandrum Institute. No wonder our Sreelekshmi is looking so proud about it.
Thank you Sr Hanife for funding this program!
No; sorry; they are not on sale. It goes to the kitchen of our half way home for people with spinal cord injuries!
The 21st anniversary issue of the popular IAHPC newsletter carries the good news that Dr Arunangshu Ghoshal from India has won third place in the Best Poster Awards of the International Palliative Care Network for “Pediatric Palliative Care Referral Practices in an Oncology Setting: A Five-Year Retrospective Chart Review”.
Dr Ghoshal forms an important link in the history of palliative care in India. He was the first doctor to join the newly started postgraduate degree course (MD) in palliative medicine at Tata Memorial hospital in Mumbai in 2012.
Congratulations Arun, and thank you IAHPC, for sponsoring the posters.
Read the April issue of IAHPC Newsletter.
Tens of thousands of people with cancer are dying in hospital every year even though they would rather spend their final days at home or in a hospice.
Although only 1% of cancer patients say they would prefer to die in hospital, 38% do, according to research by Macmillan Cancer Support, equating to 62,000 people a year across the UK.
India may be one of the youngest countries, with more than 60 per cent of its population below 35 years of age, but the picture is set to change dramatically in a couple of decades.
But does the recently released National Health Policy 2017 take this impending demographic change into account?
It does hint at a “future-ready” approach, say healthcare specialists, pointing to pre-paid health insurance that is a move towards ensuring affordable healthcare for the elderly, often left outside the insurance purview.
By Rahul Matthan, LiveMint
While treating the terminally ill, doctors are forced to tread a treacherous path. Whatever course of action we choose, our outcomes are circumscribed by the limits of human understanding and modern science offers scant hope for full recovery. Yet doctors, bound by ethical and legal obligations, are obliged to utilize all the technologies at their disposal to keep patients alive.
At some point down this path, when medical complications begin to develop, treating physicians have difficult decisions to make about what they should do next. Do they keep their patient alive at all costs—using life support if needed—or limit themselves to simply treating symptoms as they present themselves, keeping the patient as comfortable as possible as the end draws near?
By Paula Span, NYTimes.com
What happened to Beatrice Weisman before dawn on Aug. 29, 2013, was not supposed to happen: The medical staff at Maryland General Hospital found her in cardiac arrest, resuscitated her and kept her alive.
The matriarch of a close-knit family on Maryland’s Eastern Shore, Ms. Weisman, then 83, had suffered a serious stroke in June and had spent weeks in two hospitals.
Fortunately, she and her husband had drafted advance directives; she named her husband, William, to make medical decisions if she became unable to.
When a child ends up in hospital, we assume everything will be done to care for them, including minimizing pain.
Unfortunately, that assumption is wrong. Two new research papers serve as a grim reminder that pain is systematically undertreated in children.
One study, led by Kathryn Birnie of the Centre for Pediatric Pain Research at Dalhousie University in Halifax, found that fewer than half of hospitalized children have a pain management plan. In other words, controlling pain is often an afterthought.
The paper, published in the medical journal Pain Research and Management, also shows that even so-called low-intensity pain matters a lot to patients.
June 1, 2017: Certificate Course in Essentials of Palliative Care (CCEPC) conducted by Indian Association of Palliative Care (IAPC), at Trivandrum Kerala. Contact: email@example.com / 8589998760 June 2-4, 2017: Painting exhibition at Trivandrum. Contact: firstname.lastname@example.org / 9746745502
June 29-July 2, 2017: Rehabilitation products sale at Saphalyam Complex, Trivandrum. Contact: email@example.com
October 14, 2017: International conference on Peri-operative Cancer Care at Jawaharlal Nehru Auditorium AIIMS, New Delhi. Register: http://www.irchoncoanaesthesia.com/
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“When we stop making the world up in our heads and start meeting people where they are, we meet… ourselves.”
Sunshine Mugrabi is a dear, longtime friend of Pallium India. A few years ago, she visited us at Trivandrum as a volunteer and accompanied our home visit teams. In one of those visits, she met a man with a huge tumor on his neck. As the doctor and he conversed, Sunshine was struck by his lack of interest in hearing about his medication.
“I found myself getting frustrated with the man. He didn’t want to hear anything about medicine or anything else the doctor had to say. All he wanted to know was when he would be allowed to eat seeds again.” The doctor explained that he would never be able to eat his favourite food, because it can’t get past the tumor.
Everything came full circle when, a few years after her visit to India, Sunshine had an accident. She could not move her arms or legs, and was in excruciating pain. The doctors had no idea what was wrong with her. She was debilitated and dependent on her husband.
Sunshine describes her biggest problem at the time – she wanted to be able to eat more interesting food. “I wasn’t acting the way someone in a terrible situation should act. I was thinking of my stomach rather than the kinds of things dying people were supposed to think about.”
Sunshine recovered, in her words, “miraculously”. But that experience was an eye-opener for her. And now she shares that experience with us.
Please read her blog Tiny Things.