July 2016 Newsletter
In an article titled “Don’t Torture The Dying: Health ministry’s draft law confuses between euthanasia and withdrawal of life support”, Dr M. R. Rajagopal writes in the Times of India dated 20 June, 2016:
The Constitution of India guarantees life with dignity as a fundamental right. Generally speaking, we enjoy this right. But it all changes if we get an incurable disease. Or when we eventually wither and die of old age. In those circumstances, we should still have the right to live the way we want to and die where we want to. But we find that we no longer have any choice.
An Economist study found that India was one of the worst 15 countries in the world to die in, coming 67th out of 80 in “quality of death”. In India, as we near the end of life, we cease to be treated as human beings and become mere containers of disease.
Until it is seen or experienced, it is not easy to understand the degree of assault on dignity by inappropriate medical treatment in incurable diseases. Typically, even if one is fully alert and able to take decisions for oneself, one finds oneself stripped of that privilege.
In what we see as an important step in the Government Program for Prevention and Control of Non Communicable Diseases, J. P Nadda, the Hon’ble Health Minister, Shripad Yesso Naik, Minister of State (Health & Family Welfare) and Dr Henk Bekedam, the Head of WHO (India), interacted with NCD leaders from all over the country, at a meeting in Delhi on 22 June 2016.
Pallium India was pleased to be a part of this important event with other members of the Healthy India Alliance – the conglomeration of non-government organizations in the country, working in the field of non-communicable diseases. Needless to say, palliative care forms an important part of NCD control.
“If you have been in palliative care long enough in India, the sight of a person with an ugly scar around the neck would not be unfamiliar to you. Hanging is the preferred mode of attempted suicide in our country, and many people are driven to it by unrelieved pain, the extent of which, in many disease states, can be beyond an ordinary human being’s power of imagination. The National Crime Records Bureau showed that 26,426 people in the country, suffering from various ailments, chose to end their lives in 2013.”
Please see the special editorial in the July-September 2016 issue of the Indian Journal of Palliative Care by Dr M. R. Rajagopal, Chairman of Pallium India. To reduce the sad burden of pain and suffering in the country, he argues, we should be demanding that healthcare system at all levels must include basic palliative care satisfying some minimum essential standards.
Read the open access article titled “We Have a Responsibility” published in the Indian Journal of Palliative Care.
In a bid to increase the capacity for advocacy and training in palliative care, Pallium India organized a “training of trainers” program in Delhi for a dozen “middle-level” palliative care champions in the country.
Over the three days, the focus was on empowering the participants on how to facilitate learning, because we see all of them as not only clinicians, but also teachers – for students, for fellow-professionals, and for the public at large. The group also spent a lot of time understanding the current status of the National Program in Palliative Care and the Amendment of the Narcotics Act of India. The group brainstormed on our way forward.
We had done a similar exercise in Trivandrum last year, and the success was phenomenal. One of the participants of the last year’s training, Dr Seema Kunikullaya Rao, was one of the faculty members this time. She was joined by Dr Sushma Bhatnagar from AIIMS, Delhi, Dr Nandini Vallath and Dr M. R. Rajagopal.
Three participants demonstrating role play as a teaching tool – Dr. Parul Prinja as the doctor, Dr Kumar Abhishek as the son and Professor Parveen Kumar as the husband of a patient.
The word “palliative” is derived from the Latin word pallium, meaning a cloak. The idea is that palliative care forms a protective covering, even if the disease process continues. Well, what does the roof over a house have to do with palliative care?
On our home visit, we had found bed-bound Ms P., her ailing husband and two physically and mentally disabled daughters, literally being drenched by the torrential June monsoons of Kerala. They had tried moving the bed here and there to avoid getting wet, but the whole roof was leaking. There was absolutely no escape.
What would you do in this case?
The situation brings to mind a question we had quoted in an earlier blog, Would a doctor fetch a pitcher of water for a thirsty patient? Well, translated to the present context, the question was, would the palliative care team just prescribe the necessary medications and walk away, or would they do something about the leaky roof?
The volunteers from Uzhamalakkal, Ratheesh and Sreejith, and Medical Social Worker, Sarath Mohan, led by our Advocacy Manager Babu Abraham, spent their Sunday morning driving across to the home in the suburbs of Trivandrum and manually putting up a pallium over the humble home. The rain gods were on their side – it started pouring only after the work was finished.
Ratheesh, Sreejith, Sarath, Babu: we are all so proud of your Sunday act of love, initiative and compassion. The whole Pallium India team feels relieved that, by your kind act, Mrs P. and her family can keep themselves and their belongings dry even in the midst of the roaring monsoon.
The “International Update on Pain Management and Palliative Care Advances 2016“, organized by the Pain and Palliative Care Unit, Shri Guru Ram Rai Institute of Medical and Health Sciences and the Indian Medical Association, Dehradun will take place on 25 & 26 June 2016. The theme of the update is “Palliative Care-Everyone’s business” and “Pain Relief-A Fundamental Human right”. Venue: SGRR Institute of Medical and Health Sciences, Patel Nagar, Dehradun 248001, Uttarakhand.
On June 25th, a workshop aimed at explaining in detail the NDPS Rules, its amendment, procedure to obtain Recognized Medical Institution (RMI) status for procuring and dispensing opioids etc. will be conducted, followed by a day long conference on 26th June 2016. For more details, visit: http://www.sgrrmc.com/iuppca2016/
The speakers include Dr M R Rajagopal (Pallium India, Kerala), Dr Sushma Bhatnagar (AIIMS, Delhi), Dr Anjum Khan Joad (Jaipur), Dr Gautam Das (Daradia, Kolkata), Dr Brenda Ward (England), Dr Ann Thyle (Delhi), Dr Abir Doger (England) and Dr Savita Butola (Jalandar) who will share their expertise and path breaking ideas.
For registration and other details, please contact Dr Mayank Gupta (Organizing Secretary): Ph.: 08171238996, Email: email@example.com
Would anyone argue against a statement that people with chronic pain generally suffer enormously through their lives? Except that they look okay and that they may have normal life spans, is there any other reason why palliative care people do not think they have anything to do with it?
Not life-threatening enough?
Even if all your activities, social interactions and even thinking process are limited by the disease called chronic pain?
Read how a patient is afraid to visit a pain clinic. We have seen this phenomenon, time and again.
“When there is a definite treatment for snake bite, this should not have happened. Who do we blame? Whose mistake was it? What combination of errors and wrong turns led to this tragic outcome?” Ms Latha Srikanth, Vice Principal of Indrani College of Nursing, Puducherry, writes from personal experience how the victim and family ended up running from this treatment to that until it was too late to save the child.
Read the complete narrative titled “A Tragedy of Errors” published in the Journal of Pain and Palliative Care Pharmacotherapy.
The Journal of Pain and Palliative care Pharmacotherapy is an indexed journal that has made the narratives free access. The journal welcomes your Narratives on Pain, Suffering and Relief. Tell your story to the world and help improve palliative care awareness. If you have a story to narrate, share it with us. Write to firstname.lastname@example.org
The author asks her mother, “By the way, when I die, I want this-and-this to be done. I don’t want that-and-that to be done. How about you?” She notes that the answer came so naturally.
Knowing what misery can come out of inappropriate end of life care, no doubt these conversations are so crucial. But for most people, it is not easy to talk about death. Perhaps, it is not so difficult, after all. Please read Death: An important conversation to have, published in The Hindu by Jeena R. Papaadi, Pallium India’s Advocacy Officer.
Thank you, everyone who responded so warmly to our request: These children need your support
Our target for 15th June was ₹150,000 (US $2300). We have received ₹175,000. That means, we even have something left over for the coming month. We cannot thank you enough. You make us feel so strong.
A big THANK YOU to you all!
For the attention of our supporters working in CISCO: any donation that you make to Pallium India will be matched by CISCO with an equal amount. Your donation of $100 will mean that Pallium India’s work is supported by $200.
In addition, if you volunteer for Pallium India, CISCO pays for your time to Pallium India. Every hour of your time donated in some fashion to Pallium India means that CISCO would pay Pallium India a certain amount too.
We welcome international visitors at Pallium India and appreciate the support from our colleagues around the world. We request that you contact us at least 2 weeks prior to your visit so that we can make the necessary arrangements. Sorry; we would discourage “drop-ins” for fear of the impact on patient care.
Indo American Cancer Association (IACA), in association with TIPS (an organ of Pallium India), is offering a scholarship to undergo a 6 weeks residential/non residential palliative care training course at selected centres in India:
- MNJ Institute of Oncology, Hyderabad, Telengana. Contact: email@example.com
- Trivandrum Institute of Palliative Sciences, Trivandrum, Kerala. Contact: firstname.lastname@example.org
- TATA Medical Centre, Mumbai, Maharashtra. Contact: email@example.com, firstname.lastname@example.org
- Gujarat Cancer and Research Institute, Ahmedabad, Gujarat. Contact: email@example.com
- Bhagwan Mahaveer Cancer Hospital & Research Centre, Jaipur, Rajastan. Contact: firstname.lastname@example.org
Type of Scholarship
- Depends on performance of the candidate in the telephonic interview conducted by IACA interview panel.
- Full support to the outstation candidates includes – Travel, accommodation, canteen, local travel, fees with cap on all items. Partial support is given to the local candidates.
- Doctor – MBBS
- Nurse – BSc/GNM
Please click on the following link for more info: http://www.iacaweb.org/
For more information on our courses, please visit: http://palliumindia.org/courses
By Mahendra Singh
The Medical Council of India, often in the news for controversial approvals and corruption, is set to be replaced by a medical education commission that will have three independent wings to oversee curriculum, accreditation of colleges and medical ethics.
The new commission could be run by eminent persons from the medical field, who will be allowed to continue their professional commitments as the Niti Aayog panel that framed the guidelines felt this would ensure a wider talent pool.
By PT Jyothi Datta
In December 2014, two psychiatrists were arrested in Punjab for prescribing buprenorphine, an approved psychotropic drug used in pain management and to treat opium addicts. More recently, another controlled substance, ephedrine, hit the headlines, as an international story of alleged drug smuggling unravelled out of Thane reportedly involving a listed company and a Bollywood actress.
As such extreme incidents get reported around narcotic, psychotropic and controlled substances, fear stalks drugmakers and doctors involved with the production and prescription of these drugs for medical purposes. Fear is palpable among doctors using such medicines for pain management or in de-addiction programmes, says Atul Ambekar with the All India Institute of Medical Sciences’ National Drug Dependence Treatment Centre and Department of Psychiatry.
“Doctors and drug peddlers should not be treated in the same manner,” he says, calling for a system that differentiates legitimate people handling these drugs (doctors, chemists, manufacturers) from peddlers.
Lying on the side of the road, an elderly man suffering memory loss and injuries was rushed to a private hospital on a distress call made by a woman recently. With no family to claim the man who was oblivious of his identity, the hospital treated him on human grounds but he is now struggling to find his home.
The frequency of elderly persons being abused by their families, abandoned or forced to leave home is on a rise with government homes adding to the apathy.
“We have been able to treat and cure the man, but where will he live? Such cases reflect the neglect elderly persons face not just at the hands of family but also the society,” said Dr Abhishek Shukla, consultant geriatric physician and palliative care specialist at Astha Hospital which treated the man.
“It is not a rare thing in our community now, we get such elderly abused patients every week and they come in a deplorable condition with bed sores and injuries,” he added.
By C. Maya
In this tiny, land-locked country tucked away in the Himalayas, the happiness of its people, their contentment in daily life and solace in spirituality is a measure of the index of its economic development and good governance.
More than three decades after Bhutan’s fourth king, Jigme Singye Wangchuck, coined the term, Gross National Happiness (GNH) index and argued for it to be the true measurement of Bhutan’s citizens’ levels of contentment rather than the conventional Gross Domestic Product (GDP), the developed world — France, Britain, and China in particular — is waking up to the realisation that material gains need not necessarily mean happiness.
Another spritual experience.
For Phuntsho Om and Tara Devi, nursing tutors at the Government-owned Khesar Gyalpo University of Medical Science, Thimphu, their six-weeks’ course in palliative care with Pallium India in Thiruvananthapuram has been another spiritual experience — one they think will fit in well with their nation’s goal of equitable socio-economic development, environmental conservation, cultural preservation, physical and spiritual well-being of its citizens — the pillars of GNH.
As 18-year-old Reshma waits eagerly at the doorstep of her two-room home for the team of caregivers, her father, 58-year-old Baburaj, whimpers inside, mumbling of a severe headache and intense abdominal pain. It’s raining heavily, and Seema Panicker and Shyna Suneesh, the two medical nurses of the Pain and Palliative Care Society, walk quickly towards Reshma, armed with a medical kit. Their infectious smiles and cheerful greetings immediately dispel the tense mood in the house.
Diagnosed with stage 4 lung cancer earlier this year, Baburaj, a chain smoker, was referred to a palliative care unit in Kozhikode in the southern Indian state of Kerala when his oncologist realised the futility of any treatment.
Seema holds Baburaj’s hand and asks him if he has been taking his medication on time. As she checks his vitals, he answers every question diligently, visibly relieved on seeing her. Meanwhile, Shyna pores over his medical file, then brings a fresh stock of medicines from the van outside. She also hands over a bag of essential foods including rice and lentils to the father and daughter.
‘Please sit down for a while,’ Baburaj pleads with the caregivers, his eyes welling up with gratitude. Apart from his wife – who died in a train accident years ago – and his two daughters, no one has been so caring towards him.
By Dr Rajeev Jayadevan
After birth, death is the only other certainty in life. While we pay a lot of attention to the whole process of birth – starting from meticulous pregnancy checkups, choosing the best hospital for delivery (five-star labour rooms are now available at a premium), painless labour using epidural anaesthesia, even installing elaborate designer nurseries at home, to name a few – we almost completely ignore the other end of life, which is, death.
It is said that all the accumulated wealth in the world comes to no avail at the point of death. From the richest to the poorest, men will have only two wishes in their final moments: to be free from pain, and to be able to sleep peacefully.
Why are we so obsessed with the quality of birth (which, incidentally, none of us will ever remember in adulthood) but hardly bother about the quality of death?
By Aneeja Mariam Joseph
He was in agonizing pain and pleaded to a doctor for pain relief, adding that he had not slept for several days. Not only was pain relief denied to him, but he was also insulted by a doctor with the words, “What do you want me to do? Sing a lullaby and rock you to sleep?”
Even after a year, the patient says that he cannot help being angry with that doctor and cannot help feeling like wanting to stab him with a knife.
We as health care professionals can add insult to injury by our behavior. We can be cruel not only by denying pain relief but also by refusing to feel and empathize.
Why do health care professionals behave like that? Is it just callousness or is it a sense of helplessness from not knowing what to do when faced with pain and suffering?
Venu (not his real name) had come to us for pain management. He was diagnosed with have transitional cell carcinoma of the urinary bladder and underwent radical surgery and bileteral uretero sigmoidostomy in 2009. That was the medical story, the past. All that was no longer relevant. Only the pain was.
By Fazle-noor Biswas
In caring for people with palliative care needs, pharmacists have much to offer. They can work either as a clinical pharmacist, in the in-patient department of a hospital, or as a community pharmacist, serving those with palliative care needs in the community.
They provide medication reviews, education to people and families seeking out their services, and advice to physicians about a person’s pharmacotherapy.
A good relationship based on trust
A good relationship with those accessing care is very important to providing total care. A trusting relationship with the pharmacist offers a strong basis for the psychological and social support needed by the person accessing care and their family.
The pharmacist, along with other healthcare professionals, can support this person and their family members in coping with the difficult situation and taking the right decisions in these situations.
By Pallium Canada
Supportive Care…Supportive Oncology…The Comfort Team…The Butterfly Team (as may be heard in pediatrics). Why is there so much resistance to the use of the “P” word – palliative? The truth is, palliative care might not be what many people think it is.
Language provides us with a tapestry of tools for communication and understanding. In palliative care, the use of poetic license is certainly no less than in any other fields of medicine. However, the words we use can be confusing. As an example of this, there are several reasons commonly cited for the often observed disconnect between patient wishes and the care they actually receive. These include fragmentation in the health care system and poor coordination between care providers. However, one of the biggest factors may be our cultural reluctance to talk about death, or to use the “P” word.
By Cindy Schweich Handler
I hover expectantly over Ellen, and she looks up from her iPad, her eyes shiny. The device is a birthday present she asked my husband, Harry, and me to get for her six months earlier, and I’m glad we did so that she can now distract herself with old “M*A*S*H” episodes. “I’m lucky you were my mother-in-law,” I blurt. She doesn’t blanch at my referring to her in the past tense; we both know that, in light of her imminent kidney failure, she won’t be my mother-in-law much longer.
“My children all picked wonderful life partners,” she replies evenly, and smiles. It’s a nice sentiment, though after nearly 30 years of being her daughter-in-law, I want to hear something more personal, a reminder of what we meant to each other that I can play over in my mind when she’s gone. But it’s crowded in my third-floor guest room, with Harry and Jennifer, Ellen’s home health aide, looking on, and it feels too awkward to prompt her any further. From her perspective, this is not the time to get mired in sentimentality. Things are working out according to her plans.
By Rupamudra Kataki
“Death be not proud, though some have called thee… much pleasure, then from thee, much more must flow…” One of the greatest 16th century metaphysical poets John Donne says in the sonnet Death Be Not Proud that death has no reason to be proud of its invincibility, for it brings many pleasures to those whom it releases from the clutches of earthly sufferings.
Six hundred years later, those who are suffering from excruciating pain, look forward to death as their saviour. For a nation that ranks number 67 out of 80 countries in the 2015 Quality of Death Index of the Economist Intelligence Unit, death for many is a choice, not an option in India.
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/
Meet Swapna Augustine from Pothanicad, Kerala.
Born without arms, she paints using her toes.
Thank you, Dr PSM Chandran, for introducing Swapna to us.
posted by palliumindia in Newsletter