January 2011 Newsletter
Till now, Palliative Medicine was not approved as a medical specialty by the Medical Council of India (the statutory body with the authority to do so). Palliative care workers have been trying hard to get this done.
In 2009, the then acting president of the Medical Council of India, Dr Kesavan Kutty Nair, had responded very positively to our request and arranged for us to meet the then-chairman of the postgraduate board of Medical Council of India, who had agreed to do the needful.
In the Public Interest Litigation filed by the Indian Association of Palliative Care before the Supreme Court of India, this was a major prayer. At a hearing of the case on 12 November 2010, the Medical Council of India was represented by counsel and was asked by the Court to file an affidavit. Thanks to the initiative of Dr Nandini, a few of us had met one member of the MCI board, Dr Devi Shetty, who had wholeheartedly agreed with the cause and had promised to do what he can. We are sure many others in the country must also have been making similar efforts.
Professor Reena George of Christian Medical College, Vellore has just found out that the MCI has approved Palliative Medicine as a specialty and even announced an MD course (the standard post-graduate medical degree in India) in Palliative Medicine.
A giant step forward indeed! All palliative care workers in India, I am sure, would be very thankful to the numerous individuals and organizations all over the world who supported us and helped us to reach this major achievement.
When Linda Pressly from BBC Radio walked into Pallium India’s Palliative Care Unit at Trivandrum Institute of Palliative Sciences in S.U.T Hospital, she met up with Radha Bai and her husband. They were more than happy to be interviewed.
They explained how she seemed to be dying from subacute intestinal obstruction a year back (she has an active malignancy) and how palliative care made her well enough go home, functioning normally. A year later, now she is still on oral morphine and other medications, and is able to cook, look after her grand children and even attend parties!
The message is important because too often palliative care is associated with the dying process. Though available evidence shows that palliative care substantially prolongs life, this is not generally known.
Linda’s program will remove some of these myths from many minds.
The program presents the lack of access to palliative care in most of India and compares it with the situation in Kerala where a network of palliative care centers offer care to patients.
It’s estimated that nearly one million Indians with conditions like cancer die in acute, unnecessary pain because of the lack of palliative care. Restrictions on morphine prescription are being lifted, but too slowly.
One of the most sophisticated systems of palliative care in the developing world has been established in the Indian state of Kerala. The grassroots movement to create a much-valued and effective palliative care system in Kerala has been called a silent revolution. Every week, thousands of volunteers across the state give up their time to go and tend to those who are dying. They may cook food, help with chores, or simply provide a listening ear. Hundreds of thousands more people in Kerala belong to Palliative Care Societies. They donate money regularly – even just a few rupees – to help support this kind of outreach. The hope is that people will not die alone, and in pain, without any support.
Linda Pressly travels to Kerala, which has more palliative care centres than the rest of the country put together, and ask whether this is a model to treat the dying that could be rolled out in other nations, as well as other parts of India.
- Linda has a related story on the BBC News website about morphine availability in Rajasthan: Rajasthan patients’ severe pain due to lack of morphine…
Suma’s story was part of the discussion at the Third International Congress on Kerala Studies, organised by the AKG Study and Research Centre at University College, Trivandrum, from January 1 to 3, 2011.
There was one whole session dedicated to palliative care and Suma’s tragic story came up for discussion.
The audience strongly felt that both the Community and the Government have a responsibility to make sure that such needless suffering is prevented.
The meeting particularly discussed the problems of the elderly. Mr. A.K.D Pillai, Secretary of the Central Government Pensioners’ Association and Secretary of the Senior Citizens’ Friends’ Association, submitted a detailed proposal to the Congress, pragmatically listing out the possible measures that can be undertaken by the Government in association with Non-Government Organizations.
Let us hope some of these discussions will be translated to action.
Amanda Rodger is a medical student from Edinburgh, who did a two-month elective with us at Trivandrum Institute of Palliative Sciences (TIPS). She helped us by doing a formal evaluation of our six weeks course in Palliative Medicine for doctors, so that we could use the information to improve future courses.
Here is the letter that she sent at the time of leaving us:
TO EVERYONE AT PALLIUM INDIA:
I just wanted to say a massive THANK YOU! to you all for welcoming me into your team. It has been lovely coming in every morning to be greeted by smiles all round.
I have enjoyed my time here and it has been a very valuable elective experience. I have learnt a lot about palliative care and India, and most importantly, I will return to UK with fond memories.
You are an inspiring group of people, who I have much admiration for. I can only hope that I show as much compassion and care as you all do to my patients of the future.
Keep up the good work.
All the Best,
Thank you for the visit and for so easily merging into the team, Amanda. It was good to have you with us.
Hope you will come back some day to work with us!
Miss Aneeja Mariam Joseph (right), a Medical Social Worker from Pallium India, attended the international conference Excellence in Oncology 2010, held at Kolkata’s Cancer Centre Welfare Home and Research Institute from 10-12th December 2010.
The conference included hands-on workshop in Palliative Care for doctors, nurses, social workers and volunteers.
One of the delegates, a cancer survivor working with HITAISHINI, a voluntary group for breast cancer survivors, told after Aneeja’s session with them,
It was truly a great joy to see and meet people who are interested in palliative care.
I believe this means people are beginning to understand and accept the need for palliative care.
It’s about time things changed.
Dr. Rakesh Roy and Dr. Sanghamitra Bora (both had undergone the six-weeks’ certificate courses in palliative care at TIPS in the years 2008-2009, and we still consider them part of the TIPS team!) were the chief organizers of the program under Dr Arnab Gupta’s leadership.
What is it like, to be told that one has cancer?
Find out from some people who know. About three dozen of them.
One recurring theme that appears in these stories is one of emotional isolation – how some of them felt isolated even while amidst loving friends and family. The family members love; but they do not understand how you feel. But others who have gone through the cancer journey understand and support.
The stories underscore the value of support groups.
- Read an excerpt: A Survivor Maps Life After Cancer
- Hope Soars is available online from Vitasta Publishing for Rs.395…
- Proceeds from sales will go to the Indian Cancer Society!
Hope Soars narrates such heart rending stories of those brave men and women, patients and caregivers, who faced the onslaught of cancer with rare and unbridled courage. This book intends to create awareness about the disease and how to adjust to life with and after Cancer.
A chill runs down one’s spine with the discovery that one is diagnosed with cancer. The dream of a beautiful life ahead and the desire to have the whole world at one’s feet suddenly comes crashing down. Hope Soars narrates heart-rending stories of those brave men and women, patients and caregivers, who faced the onslaught of cancer with rare and unbridled courage.
Some of these stories will take you through the lives of a professor who shuffled her lectures, her appointments with the doctor and chemotherapy sessions, and it was all in a day’s work for her; a mother who lost her little one at a very tender age when he was just beginning to dream big; a young girl who had the entire life ahead of her when she found the malignant tumour in her body; and, a beautiful woman who could not bear to look at herself in the mirror after her mastectomy. But they all emerged winners in the end. These are their stories of triumph over cancer.
Hope is the common link uniting these thirty-four unique and fascinating stories. Readers will be caught unaware saying along with those who have suffered that “Yes, we CAN.” And this is the spirit that the book seeks to promote—the true mission of Indian Cancer Society.
He was angry. His relative was a patient who died after being referred to palliative care only two days back.
The patient had received a subcutaneous infusion of saline on the last day of his life. The surgeon was angry at what he perceived as quackery that his relative was subjected to.
Subcutaneous infusion came back as a therapeutic tool in adults at least two decades back. It is recommended by authorities as strong as Oxford Textbook of Palliative Medicine and is evidence based.
Yet, it has not yet become known to the medical fraternity at large. We come across the same anger about oral morphine and many other essential humane options of treatment.
How long is it going to take for us to reach our colleagues?
How can we improve palliative care advocacy among our fellow-professionals?
posted by palliumindia in Newsletter