August 2019 Newsletter
It is good to be able to share welcome news. Thanks primarily to the efforts of a disability rights activist, Dr Satendra Singh, the Medical Council of India (MCI) has now included disability rights and the dignity of disabled people in undergraduate medical curriculum. As Dr Singh says, “This is great news as future Indian medical graduates will now look at disability from a human rights perspective and not just a disease perspective.”
While sharing this optimism, let us also warn of a potential implementation gap. In our country, not always does policy translate to action and reality. We will need sustained and systematic action to ensure that the competency mentioned in the curriculum is actually achieved by the students.
(Image: Dr Satendra Singh at the Disability Pride Parade in Chicago.)
What are the most important things for a dying person?
Where would one like to die? In an intensive care unit? Hospital ward? One’s own home?
Will the dying process be easier, if we are prepared for it?
Can we leave a living will (advanced directive) to express how we want our end to be?
These were some of the questions that were raised and answers sought at a public meeting titled ‘Life and Death with DIGNI-tea‘ organized at Trivandrum on 7 July 2019 in advance of the birth anniversary of Elisabeth Kübler-Ross, who came to be known as the ‘Death and Dying lady’.
Ably moderated by Shri Prasanth Nair, IAS, (affectionately called ‘Collector Bro’ because of his way of functioning alongside the common man), the meeting brought information to the common man about how the dying process can be eased and how one could be prepared to face it.
We are happy to announce that the 3rd edition of Oxford Handbook of Palliative Care has now been published. It has one Indian editor – Dr Nandini Vallath.
Thank you and congratulations, Dr Max Watson, Prof Stephen Ward, Dr Nandini Vallath, Ms Jo Wells and Dr Rachel Campbell.
Recently, the World Health Organization (WHO) withdrew two guidelines following an allegation by two US Congressmen that WHO was “corruptly influenced” by Purdue Pharma and other opioid manufactures when it developed these guidelines in 2011 and 2012. The guidelines for treating pain in adults and children state that opioids “are known to be safe and there is no need to fear accidental death or dependence.”
Palliative care organizations around the world felt that the withdrawal was a knee-jerk reaction, and that it should have followed consultations with experts. The WHO has released a statement in essence explaining the principle of balance, with which we would all agree. The Principle of Balance states that we have a dual responsibility – to make opioids available for pain relief, while at the same time preventing their diversion to inappropriate or non-medical use.
We hope the new guidelines will bring opioids back to their rightful place so that people are not left in agony of pain.
We have one concern, though. The new guidelines are going to be evidence-based. We hope any expert committee which goes into creation of these guidelines will take into consideration the fact that for some things as subjective as pain, the quality of evidence is bound to be of relatively poorer quality.
Secondly, the weight of evidence may turn greatly in favour of the more expensive medicines. This is inevitable because at least 80% of all scientific research is funded by the pharma industry directly or indirectly. Very little research actually happens globally regarding inexpensive medicines, which, we believe, are systematically pushed out of the market.
The Indian experience with Dextropropoxyphene is a case in point. Globally, everyone would frown at the name Dextropropoxyphene. Experts, otherwise led by reason and research, have been heard to claim that it is a ‘dirty drug’. We hope that those who have gone into the depths can recount a different story.
We hope the new evidence-based guidelines will not have a negative effect on people in pain, globally. Their numbers are unbelievably large. More than 80 million people globally die with untreated, excruciating pain.
We are honoured and delighted to announce a very special collaboration between Public Health Foundation of India (PHFI) and Pallium India, who have come together with a shared vision to launch a countrywide programme to train healthcare professionals in Palliative Care.
PHFI was established in 2006 as a not-for-profit public private initiative to build public health capacity, enabled by the Government of India and supported by multiple stakeholders including foundations and philanthropists, with a mandate to build a ‘Healthier India’. This is achieved by working in 3 core mission areas: a) Developing the public health workforce and setting standards, b) Advancing public health research and technology, c) Strengthening knowledge application and evidence-informed public health practice and policy. So far, close to 25,000 healthcare professionals have been trained under training division of PHFI. While a majority of the trainees have been primary care physicians, PHFI is increasingly focussing on trainings for allied health professionals in areas like healthcare quality and program management.
Set up in 2003, Pallium India’s vision is that every person suffering from a life-limiting or life threatening condition in India has access to effective pain relief and quality palliative care. It strives to address the needless suffering of those millions in India and enable them to live a life of dignity and self-respect by working in collaboration with several national and international organisations to improve the accessibility and affordability of pain relief drugs (opioids) and other low cost medicines, to ensure the availability of palliative care services in India and to improve the quality of palliative care services provided by the healthcare and allied health care professionals.
In the coming years, it is our hope that the partnership between these two organisations achieves its mission to empower increasing numbers of healthcare professionals and build capacity aimed at alleviating the tremendous illness-related suffering in our country.
Loss of a loved one happens to everyone, sometime or other in one’s life. When it is the loss of a young life, the grief is difficult to contain. As Abraham Lincoln is reported to have said, “You have not known grief until you have stood at the funeral of your own child.”
Nevertheless, the majority of people somehow manage to live with their grief, at least outwardly leading a normal life. A few go into pathological grief, no longer able to function in the society. Yet another, albeit small, group of people make something good to come out of their suffering.
Abhijit, a bright young person, died at the age of 19, of a viral infection. His loving family and friends created the Abhijit Foundation to reduce the suffering around them.
In a ceremonious event at the famous Kanakakkunnu Palace, Trivandrum at 6 PM on 25 July 2019, Justice P Sathasivam, Governor of Kerala handed over the foundation’s annual award for social service to Pallium India – a memorial plaque and a purse of ₹200,000. Thank you, Abhijit’s family and all at the foundation. Abhijit will live through the numerous people whose lives are positively changed by this and other charitable activities that you undertake.
In an elegant function at the House of Commons of the British Parliament on 19th July 2019, Dr M. R. Rajagopal received the Bharat Gaurav award instituted by Sanskriti Yuva Sanstha, from the Member of Parliament, Dr Virendra Sharma. Our deepest gratitude to all involved, for this recognition.
From a children’s hospice in Bloemfontein to leading an international network, Joan Marston has made a major contribution to palliative care for children.
When Joan founded the children’s hospice in 1998, it was a first of its kind in South Africa. This was at the height of the HIV/Aids pandemic, with babies orphaned and dying around the country.
Image courtesy: Daily Maverick
On the first of July, we made an appeal on our website and shared it in social media on behalf of three teenagers:
Those three girls had seen how people dear to them went through agonies with major health issues and how their families were destroyed financially. Their experience with disease and suffering made them determined to become doctors. But entrance examinations for admission to medical college make no allowance for attitude, commitment or passion. Only facts and figures count. They do not stand a chance unless they attend coaching classes, which are expensive by our standards.
For the three girls, an annual requirement would be a total of ₹3.2 lakhs (approximately $4600).
We sought sponsorship from anyone who would help.
We did not have to wait for long. Mr Sandip Jariwala of Relief from Cancer, came forward to support two of them. The third was jointly supported by Kunal Ashok Desai and another person who wishes to remain anonymous.
Thank you, you wonderful donors, for giving the three girls a chance to make their dreams come true!
A state level workshop for stakeholders on Integrated Palliative Care and Geriatric Care Program was organized by Government of Kerala, in collaboration with National Health Mission and Department of Health Services (Kerala), on 25th July 2019, at State Institute of Health & Family Welfare, Thycaud, Trivandrum.
Lijimol, Dr. Deepak and Babu Abraham represented Pallium India in the workshop, and expressed their views and offered suggestions. Also among the participants were representatives from different government departments of state and districts, members of IAPC (Kerala), and representatives of Community-based organizations (CBO) & non-governmental organizations (NGO) from different parts of Kerala.
A group of Britishers of Kerala origin get together in London frequently. Their organisation named “Kala” (meaning “art”) was founded and is presided over by Dr P.K.Sukumaran Nair, a paediatrician. Dr Nair is also the founder of “Pallium Kulasekharam”, an initiative that he set up in his birthplace in Tamil Nadu. Pallium India is their fellow traveller.
Pallium India was privileged to be a part of their meeting in London on 20 July 2019, chaired by Dr Parvathi Nair. The meeting discussed the current status of healthcare in India and how palliative care could bring in compassion into it. This group has been supporting palliative care in Kulasekharam for many years now.
Parkinsonism is a cruel disease. Many associate it only with the tremors; but it can also affect the psyche. The suffering is long drawn out.
The person with the disease may get some attention; but the silent caregiver is seldom acknowledged. We are glad that Caregiver Saathi is giving some attention to it.
Please read the article by Shwetha Sivaraman on the Caregiver Saathi blog: Role of a Caregiver in early stage Parkinson’s
This year’s World Hospice and Palliative Care Day is on October 12, 2019.
The theme for this year’s palliative care day is: Palliative Care: it’s “My Care, My Right”.
The theme My Care, My Right aims to communicate that palliative care can be demanded by the public – and that, together, every person impacted by a life limiting illness can influence their policy makers to prioritize palliative care financing under Universal Health Coverage.
This year’s WHPCD 2019 comes on the heels of the UN High Level Meeting on Universal Health Coverage (UHC) on 23 September. Therefore, a key action for the campaign will be to call on governments to listen to people who need or access palliative care and support the inclusion of the essential package of palliative care in all national Universal Health Coverage (UHC) schemes.
To know more about World Palliative Care Day, please visit: http://thewhpca.org/about
Gilly Burn, Founder Director, Cancer Relief India, and a dear friend of palliative care in India, is organizing a study/teaching tour beginning in February 2020. The tour is planned to follow on from the IAPCON2020, Guwahati.
The Serendipity Palliative Care Study Tour enables you to make a difference by giving your time and expertise to teaching palliative care as well as being inspired to share and implement what you learn in your workplace.
The tour begins on 17th February and ends on 3rd March.
Queries? Please write to: email@example.com Or WhatsApp / Mobile: +44(0) 7770385685
27th International Conference on Palliative Care (IAPCON 2020, Guwahati), is scheduled from Feb 14th to 16th, 2020 with pre-conference workshops on Feb 13th, 2020 at Guwahati Medical College, Guwahati.
The theme of the Conference is “Entrust, Engage & Empower”.
Abstract submission is now live. For guidelines, please visit: http://iapcon2020.com/abstract_submission.html
For more information, please visit the conference website: http://iapcon2020.com/index.html
When it was organized for the first time a few years ago, ‘Manjuthulli’, an exhibition and sale of paintings, was a small program. Conceived and conducted by Pallium India’s volunteers, well-wishers and staff, today it has become an event everyone looks forward to every year.
This year, ‘Manjuthulli’ was a three-day event from July 4 to 6, arranged at Museum Auditorium, Trivandrum, and was inaugurated by Cartoonist P V Krishnan. Young artist Anavadya enthralled everyone with her instant caricatures. Jasmin Naur Hafiz’ Ghazal Mehfil mesmerized the audience on the last evening of Manjuthulli.
Artists from all walks of life contributed their work with enthusiasm. Manjuthulli has indeed evolved from ‘a drop of snow’ to an avalanche that engulfs everyone in compassion and humaneness! We thank everyone who supported us including the many goodhearted people who visited and purchased the paintings, and those from outside the city who were unable to visit, nevertheless made the purchase online. Part of the proceeds (and in some cases, all of it) from the sale go towards Pallium India’s patient care activities.
Here are some of the photos from the event: https://www.facebook.com/pg/palliumindia/photos/?tab=album&album_id=3382432605116128
When Dr Mary Abraham and Dr Vandana V. Prakash first thought of writing a book on pain, it wasn’t born out of any desire to see their names as authors. What rather troubled them was the lack of awareness related to pain.
Their book Conquering Pain, published by Harper Collins, tells the reader how to prevent pain, treat it and lead a better life.
That Good Night: Life and Medicine in the Eleventh hour
The Good Night: Life and Medicine in the Eleventh hour by Dr Sunita Puri sensitively explores the world of palliative care, making it an emotional as well as an informative read.
In an interview with The Asian Age, Dr Puri says, “Our field is, unfortunately, perceived as ‘giving up’ on patients when we actually work very hard to control their pain and suffering, to assuage their fears, to support their families, and to talk openly about what matters most to them in the time they have to live.”
She adds, “I hope that my book and the efforts of organisations within India will eventually make palliative care into a service that Indian patients and families expect for themselves when they are very sick.”
The estimated number of people living with cancer in India stands at around 2.25 million. Every year over 11,57,294 lakh new cancer patients are registered.
Palliative care not only provides comfort for the patients in their last days but also helps families lead a better quality of life while dealing with terminal illness.
Video of the Month:
Inclusive Cancer Care- Treating India’s Poor | Dr.R.Ravi Kannan
Watch the video here: https://www.youtube.com/watch?v=w78V3kGl5So
This course is ideal for healthcare providers and volunteers working in healthcare, and patients and families living with terminal illnesses. No prior experience with palliative medicine is necessary.
Enrollment closes September 1st, 2019.
End date of the course: October 14th 2019
Please see the brochure.
For more information, visit: https://lagunita.stanford.edu/courses/course-v1:Medicine+PCA+India_SelfPaced/about
Compassionate Community for Care – Campaign
Please join us in making this world a better place!
Pallium India invites communities – residents’ associations, welfare groups, pensioners’ associations, senior citizens’ clubs, youth clubs etc. to join us in our
“Campaign on Compassionate Communities for care”
– To foster a future generation that is socially responsible and sensitive to the needs of the destitute and the weak
– To create community awareness regarding palliative care and to mobilize community support
– To ensure continuum of support to the victims of needless and severe health related suffering.
– To create a network and generate a platform for people to come together and work towards this cause
– and more…
Babu Abraham, Manager – Advocacy: +91-9746745502 / firstname.lastname@example.org
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.
- Aug 21, 2019: Foundation course in Palliative Medicine for Doctors, in Trivandrum, 10 days. Register: https://palliumindia.org/courses/foundation/ Contact: +91-8589998760 / firstname.lastname@example.org
- Sep 2, 2019: Certificate Course in Pain and Palliative Medicine (for doctors) and Certificate Course in Palliative Nursing (for nurses) CCPPM: https://palliumindia.org/courses/ccppm/ CCPN: https://palliumindia.org/courses/ccpn/ Contact: +91 8589998760 / email@example.com
Have Queries? Write to: firstname.lastname@example.org.
Find out more about our courses at: http://palliumindia.org/courses/
Pallium India’s Facebook page has over 9000 likes.
We regularly post articles related to palliative care from around the world.
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/
Smriti Rana, Pallium India’s program director, reminds us of this quote from Arundhati Roy’s “End of Imagination (1998)”.
“The only dream worth having is to dream that you will live while you’re alive and die only when you are dead”.
What does that mean?
“To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never to forget”.
posted by pallium india in Newsletter