February 2019 Newsletter
Ahead of world cancer day (which falls on 4 February 2019), the World Health Organization has come out with new evidence-based guidelines for the management of cancer pain. Please click here to download the guidelines in pdf format.
Don’t have the time to go through the whole thing? Take a peek at the summary as a PowerPoint presentation.
Pallium India’s WHO Collaborating Centre for Training and Policy on Access to Pain Relief is proud to have been a part of the process. Dr Varghese Cherian of WHO, Geneva, deserves our profound thanks.
(Edit: In an earlier version of the blog, we had mistakenly given Feb 4 as world palliative care day. Feb 4, 2019 is world cancer day. We regret the error.)
“Kerala tried to provide [primary care services as described by the Astana declaration] and more with mixed results. These services cannot be provided without adequate human resources. It is nearly impossible to provide them with the current Indian norm of one primary care team for a population of 30,000. Kerala tried to reduce the target population to 10,000. Even the reduced target turned out to be too high to be effective,” writes Shri Rajeev Sadanandan IAS, Additional Chief Secretary, MoH&FW, Kerala, in this Op Ed titled “Lessons from Kerala“, published in The Hindu on 3 Jan 2019. Shri Rajeev Sadanandan was also the keynote speaker at a recent workshop on “Palliative Care & Universal Health Coverage in Kerala“, organized in Trivandrum by Pallium India and Govt Medical College, to commemorate Universal Health Coverage (UHC) day.
We agree; Kerala could indeed provide good primary care, if only each primary health care team was expected to perform a job that it could realistically handle. Currently, one team has to care for a population of at least 10,000. More than 3,000 is not realistic to achieve. Obviously, the manpower needs would be huge.
Is this a realistic dream? We would say: Yes – if as a nation, we decide to give due importance to health. Any civilised country allocates at least 5% of its GDP to health, whereas India spends an abysmal 1.25%.
While we are busy making money, will we not end up creating a society with the majority of its members in ill health?
Vijesh V.V., Project Officer at Pallium India, writes:
I have seen student magazines dedicated to arts, sports, love and often topics of academic interest. But a student magazine on palliative care is the last thing I expected to see in India in this decade. I am writing to let my fellow palliative care enthusiasts know that Lexicon, an online quarterly medical magazine and blog, born in India and operated by medical and paramedical students, has published their 24th edition, the latest one carrying special theme feature on palliative care titled ‘The cloak that matters’. Lexicon has a consistent readership base of over 25,000 across 250 medical colleges in India and has an international following as well. Integration of palliative care into undergraduate medical education being one of the key strategies of palliative care advocacy, it is indeed an immensely inspiring and encouraging development worth appreciating.
This time the edition is a 76 pages’ read organized judiciously under 16 headings. The edition features articles, initiatives, interviews and photographs. ‘The cloak that matters’ discusses in detail the history of palliative medicine, dignity, empathy, ethics, pain, suffering, spirituality, research, technology and career options in palliative care. A core team comprising of Dr. Amogh Natkarni, Dr. Shreeya Mashelkar, Dr. Anushka Reddy, Dr. Madhura Mandik, Dr. Tuhina Mishra, Dr. Poonam Nayak and Nisarg Kahane spearheaded this initiative. Contributors to the 24th edition include palliative care physicians, general and specialist practitioners, academicians, social worker, a priest and medical students. This is a simple yet thought-provoking read and editors have taken special care to make sure that the content is appealing to the primary readership i.e. students.
When tasked with preparing a summary of this edition, looking at the number of pages and considering a strict timeline, my initial intention was to skim through it and prepare a superficial report. But the novelty and depth of the content made me read the whole document in one sitting. I hope those who are reading this blog post will find time to go through the whole magazine and recommend others to do the same.
The first chapter is on the evolution of palliative care in India. Dr. Vishnu Priya Basham, a specialist general practitioner in Australia eloquently lists the ‘story’ of evolution. Next is a gripping read on the experiences of a young doctor that made her realise where she stood in terms of being a better physician and catering to the needs of patients, in the context of palliative care. She talks about the responsibilities one assumes when he/she chooses to sit in the ‘big black doctor’s chair’.
“When I think of the question of ‘empathy’, I like to think of primeval man; a frail and unprotected creature that lacked the physical skill and ability of the other species that cohabited its world. A creature that used cognitive processing as its secret weapon to survive on a hostile planet; a species that changed the contours of nature to reduce its disadvantages vis a vis predators; individuals that had to band together in groups to protect themselves. For primeval man was social by design, there was no other way for him to ensure his survival”, writes Dr. Abhinav Chichra. In this article; one of my favourites, the author delves deep into the intricacies of empathy and social connect and argues that they are rooted in biological processes.
Dr Anindita Das, a radiation oncologist, poignantly narrates the pain of a palliative care physician:
“I am the gloved, aproned figure.
Today, I do not have the gloves, the apron.
But I am bound to keep this invisible mask. I am the Doctor.
And the Doctor cannot cry”.
Suicide incidence and ideation is rather common among people suffering from life threatening and life limiting diseases. Dr. Shivani Vakilwala, in her article titled ‘choosing pain free life over death’ lists research findings substantiating the achievement of palliative care in reducing suicide incidence. Another interesting aspect of this article is a detailed account of challenges faced by care givers.
Rev. Dr. Arul Dhas, reader, Chaplaincy, CMC-Vellore talks about life, pain, meaning, connectedness, forgiveness and hope in the context of extreme suffering. Another brilliant article written by Dr. Sushma Sivananda, resident physician at National Cancer Centre, Singapore explains the ethical issues involved in palliative care.
A highlight of the 24th edition of Lexicon are the interviews given by three stalwarts of palliative care; Dr. M R Rajagopal, Dr. Reena George and Dr. Robert Twycross. The well thought-out and carefully crafted interviews deal with education and training in palliative care, pain, death, dignity, empathy among physicians and newer generation and healthcare expenditure. Through frequently discussed questions, interviewees offer fresh perspective to the readers. One chapter in the magazine is dedicated to Pallium India. Ms. Chaitalee Ghosalkar, in her article titled ‘Because the patient matters – Pallium India, Kerala’, gives a detailed account of the organization and its activities.
Tech-X, another favourite of mine, written by Dr Amogh Nadkarni from Grant Government Medical College, Mumbai, is about the application of new clinical technology in palliative care.
Please do read the magazine. The 24th edition of Lexicon is available for free download at http://lexiconin.com/latest-edition
Pallium India has been working closely with Age Care Foundation in Vishakhapatnam to advance palliative care in the state of Andhra Pradesh in South India. Dr Raju, Dr Vidya Vishwanath and their teams are doing a great job there.
Our team had three delightful days in Vishakhapatnam and Vijayanagaram.
The activities included several strategy meetings in various institutions, three screenings of the Hippocratic (one organised by Age Care Foundation, one in GITAM University and one organised by Dr Murthy, Dr Narendra and their teams in Vijayanagaram), and an absolutely delightful interaction with volunteers of Age Care Foundation.
One of the highlights of the tour was the inauguration of a new palliative care service in Vijayanagaram. We have high hopes for the future.
Read more about recent developments in Andhra Pradesh:
(Maulana (in green) with fellow volunteers.)
Lakshadweep, the group of 36 islands with its exotic and sun-bathed beaches and lush green landscape, forms a Union Territory of India, off the Southwest coast of Kerala in the Arabian sea. Geographically isolated from mainland India, the island had no access to palliative care till Maulana, a man who could only be described as the essence of goodness, came on the scene. He visited Pallium India at Trivandrum, formed a registered charitable organization by name Thanal (meaning Shade), and in a few months, Dr Ali and Mr Kahfi (a nurse) underwent a six-week course in Pallium India’s Trivandrum Institute. In a year, we had the first palliative care unit in the island of Kavarati. And since then it has grown from strength to strength.
A few pieces of good news from Lakshadweep:
• The Lakshadweep administration has given an award of appreciation to Thanal (purse of Rs 100,000).
• The Lakshadweep Development Corporation Ltd has given a grant of one million Rupees out of its Corporate Social Responsibility program.
Congratulations, Maulana and team. We shall look forward to hearing about your participation in the forthcoming Health Mela; we understand that Thanal has been granted a stall there to showcase its work. And Pallium India is indeed very proud to be your fellow-traveler.
Two doctors and seven nurses from Uttar Pradesh completed a 10 day foundation course in palliative care with us in Trivandrum in January 2019.
We are particularly grateful to the government of Uttar Pradesh and Tata trusts for facilitating this initiative.
A comprehensive palliative care centre, established at PKTB Sanatorium and CD Hospital on K.R.S. Road, was dedicated to the community on Friday.
A joint initiative of Swami Vivekananda Youth Movement (SVYM), an NGO, and Mysore Medical College and Research Institute (MMCRI), 24×7 institutional-based palliative care services will be available for free to those suffering from life-limiting diseases and disorders.
The Kadambur grama panchayat here has set an example of initiating efficient palliative care for people with terminal illness and their families as it is the first to start palliative care activities under the Sparsham project started in Chief Minister Pinarayi Vijayan’s constituency Dharmadam.
Kadambur was declared total palliative-friendly panchayat by Edakkad block panchayat president M.C. Mohanan on the occasion of a Kerala Palliative Care Day function held here the other day. The Sparsham project envisages offering palliative services to people with serious illnesses in the constituency under the respective local bodies. The project was started in October.
In 2010, an epoch-making article was published by Fosbol and others, in the famous medical journal named ‘Circulation’. The article, which reported on a study conducted on the whole of Danish population over a ten year period, brought important new information. It brought one of the most popular pain killers used in the world, Diclofenac, to the dock. The study found that the use of Diclofenac was associated with five times more risk of heart attack or a stroke. In short, it caused problems to the heart and to the brain, almost as much as Rofecoxib, which was banned around fifteen years back.
Following this, we in Pallium India stopped purchasing Diclofenac for free distribution to patients, and instead started using Ibuprofen, which, according to the study appeared to be the least harmful among NSAIDs.
It is amazing how long medical practice seems to take to change, even when evidence is presented. After 9 years following the publication of the Fosbol study, Diclofenac continues to be one of the most widely used medicines globally. India is no exception.
More information has now come to light. An article published in the British Medical Journal of 2018 by Dr Morten Schmidt and others show continuing evidence from a meta analysis of 252 nationwide studies in Denmark that prove beyond reasonable doubt the adverse effects of Diclofenac. The authors conclude, Diclofenac poses a cariovascular health risk, compared with non-use, paracetamol use, and use of other traditional non steroidal anti inflammatory drugs.
We urge all readers to remember this. We now have more than enough reason to stop using Diclofenac as the NSAID of choice.
Congratulations, Prof Sushma Bhatnagar (editor-in-chief) and Prof Naveen Salins (editor). Indian Journal of Palliative Care (IJPC) got selected in Thomson Reuters ESCI. The journal will now be available in Web of Science and will get a new logo at IJPC website soon.
Looking back at the journey from 1994 when Indian Association of Palliative Care (IAPC) was born, the journal has been one important organ of the organization which registered a steady growth to reach the heights that it has attained now. We remember with gratitude each editor who brought it one level up.
by Ashley Johnson, University of Iowa
During my first day on home visits we saw ten patients throughout what I can only describe as the country/jungle/towns. Finding a patient’s home for the first time would not be an easy feat as I did not see any signs, nor did I remember to look for such things at the time. On the charts they mention home location and additional helpful info, but nonetheless it would be a challenge! For example, after our last home visit of the day trying to get down the hill all the men were out of the Pallium van trying to coordinate a way for our team to stay on the road. It is obvious numerous variables are happening to make sure a home visit happens. That perhaps was one of the first things that surprised me was the energy it took just getting to patients’ homes. I cannot quite imagine during monsoon season. Practicing in the US we have primarily paved roads and access to some degree is available. In my own career the rural areas I have had difficulty accessing and this made me realize the commitment health care often provides to its patients whether it be in India or the US.
By Caprisse Honsbruch, University of Iowa
My first home visit was to Palode. My group saw 10 patients with various conditions. There were people with cancer, amputations, stroke sequelae, paraplegia, diabetes, hypertension, and asthma. The age range of the patients were 23-90 years old, and there were 7 men and 3 women.
The experience was not what I was expecting. I was expecting more medical treatment and interventions, but these visits were more check-ups for chronic conditions. There were many social and psychospiritual interventions done, probably because there was a social worker on the team. Some of those interventions included setting a patient up with a way to support the family by raising chickens, making sure the patient’s child goes to school, helping a patient get a disability pension from the government, and taking steps to help the patient rehabilitate their house. That was really neat for me to see because that is not something that a pharmacist is usually involved in. It made me have a greater understanding and respect for what social workers can do. In the future when I’m hopefully a hospital pharamcist, I will go to the social worker because they seem to be able to work miracles for patients’ social needs.
By Rachel Mullin, University of Iowa
Fuzzy. That was the word I initially thought to use when describing my jet lag experience. The strange thing was that there were times where I wasn’t thinking as much as I was going through the motions. I would get lost in a mind fog and then snap back when I realized someone was saying something to either the group or (more embarrassingly) to me alone.
This would be a very frustrating occurrence if it happened often and ultimately, I believe it would affect my social health.
In two days I experienced a slight deterioration in my emotional health. A year long experience would truly be awful, and may very well affect all areas of wellness.
Support our budding stars to have a better future
“Cancer is my prison, and intolerable suffering is the sentence on my family…”
The brunt of suffering from life threatening and life limiting diseases is inflicted not just upon the patient, but on the whole family. Such ordeal drains the sufferer and the family physically, psychologically, socially, spiritually and, most importantly, financially.
According to Insurance Regulatory Authority of India, out-of-pocket expenditure in India is as high as 62%. This means that out of every ₹100 spent for healthcare, ₹62 is incurred by the people. This burden is compounded in case of prolonged and serious suffering. Other than the physical and mental trauma, catastrophic expenditure pushes families into dire poverty which further deteriorates their condition and drags them deep into the uncertainties of life.
Pallium India works with patients and their families saddled by protracted suffering. When a family member has serious life threatening disease, children in the family lose out on care, support and guidance when they need it the most. Most often families may not be able to continue supporting their children’s education or children may be forced to forgo their education in want of looking after their family member. Pallium India provides educational support for these children.
You can help Pallium India support education of children from underprivileged families who receive palliative care from us. There are countless deserving families, but we are able to reach only a fraction of them.
The following are the fee details per student:
Up to 12th std: ₹8000 per year
Degree: ₹10,000 per year
Professional courses: ₹35000 per year
Pallium India is looking for land in Trivandrum
Pallium India needs 1/2 to 1 acre with good road access in Trivandrum for its headquarters. Expression of interest invited to donate/long lease. Please contact: firstname.lastname@example.org / 9746746528 / 9074680883
Kindly share this among your connections.
By Mark Starmach
First, you withdraw.
Life shrinks down to the size of your home, then to your bedroom, then to your bed—sometimes over months, but more often over weeks.
Old joys stop having the same pull.
You eat less, drink less. Have less interest in speaking.
As your body’s systems start shutting down, you have less and less energy.
You sleep more and more throughout the day.
You start to slip in and out of consciousness and unconsciousness for longer periods of time.
Staying alive starts to feel like staying awake when you are very immensely tired.
At some point, you can’t hold on any longer.
And then you die.
A calm fall into a cosmic sleep.
The 26th International Conference of Indian Association of Palliative Care – IAPCONKochi2019 – will be held on 8th, 9th and 10th February 2019 (with a Pre-Conference Workshop on 7th February 2019) at AELI Hills, Keezhmadu, Aluva, Ernakulam, Kerala, India.
The Conference theme “Voices in palliative care; ensuring quality, creating solutions” centres around the core palliative care attitude of listening…to those living with serious health-related suffering and their families, to our communities, to our palliative care teams, to global palliative care advocates and to our policy and academic leaders.
Visit the conference website: http://www.iapconkochi2019.com/
Follow IAPCONKochi2019 on Facebook: https://www.facebook.com/iapconkochi2019/
Gujarat Cancer & Research Institute, Ahmedabad, Gujarat invites applications to the posts of Junior Resident & Senior Resident.
No. of vacancies: 1 each
Nature of Job: Full time Residency
Qualification: MBBS or Diploma in Clinical branch for Junior Resident, MD in Clinical branch for Senior Resident
Place of Job: Dept of Palliative Medicine, Gujarat Cancer & Research Institute, Ahmedabad
Remuneration: Stipend as per Gujarat Govt. At Present – 60000/ P. M. (JR) , 66000/ P. M. (SR)
Reporting to: Dr Priti Sanghavi
Job Description: All Clinical work as per GCRI Rules
Language: English, Hindi
Experience: As per prevailing rules of MCI.
How to apply
Interested candidates can send detailed and updated CV to email@example.com with email subject as “Application for the post of Junior Resident / Senior Resident”.
For more details Contact: Dr Priti Sanghavi, firstname.lastname@example.org / 9825420656
by Elena Curti, The Tablet
There is an urgent need to ease people’s fears about death and dying, the palliative care pioneer, Kathryn Mannix, told an audience in west London on 18 January.
Mannix was speaking at the first public event hosted by The Art of Dying Well, at St Mary’s University’s venue, The Exchange, Twickenham.
“I would love to see an ordinary community palliative care scene in a soap opera. We can’t keep explaining what happens one family at a time,” she said.
by Archit Mehta, The Hindu:
“If you ever hear a doctor say ‘there is nothing more we can do’ don’t believe that the patient’s pain can’t be reduced,” says Dr MR Rajagopal, chairman of Pallium India, an NGO offering palliative care services.
Endorsing the declaration of the Global Conference on Primary Health Care at Astana in Kazakhstan in October last, Dr. Rajagopal, who has been running palliative care services in Kerala for many years, said healthcare delivery will not be successful without the participation of the community. He commended the Mysuru community for coming forward to be part of the palliative care initiative.
by Niki Seth-Smith, The New Humanist
While all the attention is on western drug misuse, 80 per cent of the world’s population goes without sufficient pain relief treatment.
Dr M. R. Rajagopal has been called the “father of palliative care in India”. He has spent more than two decades doing clinical work and advocacy to improve care for the dying and those suffering from life-threatening illnesses. The use of opioids for pain relief is crucial to this work. Yet he has had to fight to prescribe them, including amending the country’s legislation. “Only a tiny, tiny minority of people in India have access to pain relief,” he says. “We have people travelling as far as 300km to get their refill of morphine prescriptions. There are many states where it is totally unavailable.” According to Human Rights Watch, 96 per cent of needy patients in India can’t access opioids. Now Rajagopal is worried that the dependency crisis in the US will harm the slow progress being made in India.
By Mark Taubert, The Washington Post
Windblown rain lashes against the hospital windows in an uncertain rhythm that seems even more unsteady as I enter the patient’s room near the nursing station. There is music in this room. Two people sit in chairs by the bed of a patient, a woman who is lying very still. I recognize the voice of Elton John coming from a tablet computer on the bedside table. He’s singing “Crocodile Rock.”
“She liked this,” says the woman’s daughter, smiling and rolling her eyes, as though to say “Elton John, really?” The dying woman’s husband glances at his daughter, then at me, and says, “We followed the advice from one of the nurses to play some music in her last few hours and days.” He smiles slightly, as if in apology for the jaunty tune ( I never knew me a better time and I guess I never will ) in this solemn setting.
Video of the month: Morphine and Access to pain relief
By Ann Broderick
The concept was simple enough: provide the staff with a measurement of their height, weight, blood pressure, and if they could manage the needle poke, a random blood glucose.
The India Winterim Pain and Palliative Care section students commandeered some tables and blood pressure cuffs. For two Fridays in a row, the staff seemed to enjoy being the patients after all their care of patients during the week.
It was a little puzzling for staff at first that we simply wanted to give them this information for their own health. Each staff member got a card to put in a purse or wallet.
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:
Write to us: email@example.com
Call us: +91-9746745497 (India) / +1-718-273-8597 (USA)
All donations to Pallium India are tax deductible.
- Feb 8, 9, 10, 2019: The 26th International Conference of Indian Association of Palliative Care – IAPCONKochi2019 – will be held on 8th, 9th and 10th February 2019 (with a Pre-Conference Workshop on 7th February 2019) at AELI Hills, Ernakulam, Kerala, India. Conference website: http://www.iapconkochi2019.com/
- Mar 4, 2019: 6 weeks certificate course in palliative medicine and nursing (CCPPM, CCPN) at Trivandrum. Register: http://palliumindia.org/courses/ Contact: firstname.lastname@example.org / 8589998760. Last date to apply: Feb 18, 2019
- Apr 26-28, 2019: Three day volunteer training program in Trivandrum including home visits. Contact: email@example.com
- May 1, 2019: 10-day Foundation course in palliative medicine, at Trivandrum. Register: https://palliumindia.org/courses/ Contact: firstname.lastname@example.org
- June 3, 2019: 6 weeks certificate course in palliative medicine and nursing (CCPPM, CCPN) at Trivandrum. Register: http://palliumindia.org/courses/ Contact: email@example.com / 8589998760.
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 8500 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 5 p.m., except on Sundays and National holidays) for information related to palliative care and about establishments where such facilities are available in India.
or E-mail: email@example.com
Address: Pallium India Trust, VP 80/13, Golden Hills, Venkode P.O., Vattappara, Thiruvananthapuram 695028
For more details, please visit: http://palliumindia.org/info-centre/
Anne Wallace, a nurse from New Zealand, through a series of serendipitous events, came to volunteer with Pallium India this January. She was accompanied by her husband Ian, whose area of expertise lay in forestry and gardening – on a seemingly different tangent from health care. While it was pretty clear that Anne had plenty to do – home visits, rounds of the in-patient unit and other clinical work – where would Ian fit in, we wondered.
But fit in, he did. And how! He came across Shriya (who is interning with us for a month), tilling the soil in the meagre flowerpots outside with a little stick she had found lying about. Thrilled at their mutual interest, they teamed up and decided to put their love for gardening to use.
Their attention was immediately drawn to the rather neglected backyard – an eyesore cluttered with rubble, weeds and rocky surfaces that immediately repelled people. Ian drew upon his vast experience, and with Shriya assisting him, began the rather gargantuan task of clearing up the mess. People began to gather – first out of curiosity, then to help.
A patient caregiver, Rama, pitched in and helped create a composter. Other patients and caregivers also came – this unusual activity in a hospital backyard giving them respite from the wards. A shade tent went up, so that people wouldn’t be chased back inside by the sharp sun, and potted plants could be sheltered.
This wonderful, spontaneous and unprompted coming together of people has been steadily transforming the erstwhile dump yard into a place of joy. A place that Ian and Shriya have named – “The Healing Garden”. There couldn’t be a more apt name.
But exponentially more beautiful than the change in scenery has been the visible change on the faces of people visiting this Healing Garden.
One evening, Ashla rode in on her wheelchair (something that would have been impossible for her or any other wheelchair user to do a week before) and watched her first sunset in many years, accompanied by her friend Seema*, another patient in our unit. We asked Ashla what was it precisely that made her happy. “Being out in the open is such a treat. My conversations with Seema were definitely more enjoyable in the garden than in the ward! For the longest time, she could see plants and flowers only in photographs as she has been confined to hospitals. And look at Mr Antony* from our half-way home. He has spent hours painting the pots and just enjoying life.”
In palliative care we talk about total pain and total care. We talk about the adverse influence of psycho-socio-spiritual factors on physical suffering and quality of life.
In just over ten days, we have witnessed the barren and broken brought back to life. And it’s not just the garden we are speaking of.
Ian – your garden is love made visible. Thank you.
And thank you everyone who helped.
If you would like to support this wonderful work they do, please click here: https://givealittle.co.nz/cause/create-a-healing-garden-for-pallium-india
(Photos: courtesy: Ian Wallace)
posted by pallium india in Newsletter