December 2013 Newsletter
Indian Parliament disappoints. What next?
Losing another chance to relieve pain and suffering among India’s millions, the Parliament adjourned sine die amidst political turmoil, failing to take up amendment of India’s Narcotics Act. It is very unlikely that there will be another session of the Parliament during the term of the current Government and pending bills become null and void.
To the person who responded to this saying, “They don’t care”, let us voice a dissent. It is not “they”. It is “us”. We live in a democracy. We are responsible for what our elected representatives do. If they failed to act, it is because we were not able to raise our voices loud enough to demand justice on behalf of those who are voiceless. On reading about it in palliumindia.org, Dr Ros Taylor, a visiting palliative care physician from UK responds: This is TERRIBLE news…I saw 3 patients in absolute agony in the outpatient department of the cancer hospital in Thakurpukur, Kolkata this morning, all under the age of 45 with advanced cancer…the outdated licensing and legal loopholes are making this simple safe and effective drug out of reach to the millions who could benefit.
Well, what now?
We are going to continue our efforts on two fronts. On one, we shall continue to work with the Government of India so that the new Government which will come into office next year will take up the amendment. Secondly, we shall continue our program of working with State Governments to simplify narcotic regulations at their level. We hope for better luck in the new year.
Pallium India is very proud of its association with Dr Anjum Joad and team at Bhagwan Mahaveer Cancer Centre in Jaipur, Rajasthan to develop a palliative care training centre. There are so few in the country, particularly in North India! The first 6 weeks’ course for doctors and nurses is going on there now. Pallium India’s course coordinator, Mr Jayakrishnan Kalarickal, spent a week at Jaipur helping out. Dr Odette Spruyt too managed to do a visit on behalf of “Hamrahi”, the collaborative support system that Pallium India and Australasia Palliative Link International (APLI) set up together. In the picture, you see Dr Odette in the middle, with the ever-smiling Dr Anjum Joad kneeling in front.
Congratulations, Anjum, and thank you for allowing Pallium India to work with such a bundle of cheerful energy as you! And thank you, Dr Jerina Kapoor and Pallium India – USA for supporting this project.
Pallium India’s patient service in Trivandrum is taking a step forward by establishing an inpatient facility based in Arumana Hospital at Perunthannii on the West Fort – Eenchakkal road. We were a bit concerned about raising the funds for the expenses, when on Christmas eve, Santa Claus appeared in the form of a phone call from Ms Gilly Burn. She is promising to support a major part of the expenses of the establishment for a period of one year.
Ms Gilly Burn is well known in palliative care circles for her pioneering initiative to promote the development of palliative care all over India. She has traveled from place to place teaching and mentoring. Thank you Gilly, for all that you did for palliative care in India, and thank you for this kind support. It means a lot to the people whom we have the privilege to treat.
The new facility is expected to be functional by 03 January 2014.
Pallium India became 10 years old on 15 December 2013.
The staff had a get together on the 13th morning, with a lot of singing and dancing. In the afternoon, we got together for a public meeting at which the honored guest was Mrs Gomathy. She had come to us as a patient, but is also the sole earning member and carer for three of her brothers who were born with a congenital condition which made them unable even to sit up by themselves. Her story had appeared in the movie “Life Before Death”. Her strength of character and resilience have been such a great inspiration for the whole team and we honored her with Pallium India’s bravery award. In the picture, you see her receiving it from Professor Sara Varghese.
The pediatric palliative care clinic that we conduct for children in SAT Hospital (part of the Government Medical College in Trivandrum) for which we collaborate with the Departments of Pediatrics and Pediatric Neurology, celebrated its second birthday on 14 November 2013. About 100 children receiving palliative care, the majority having neurological problems like cerebral palsy, got together.
Those of the readers who come from developed countries cannot imagine the extent of the suffering that families are plunged into, when there is a near-total lack of any social support from the health care system which at best prescribes medicines and then forgets about them.
The pediatric palliative care service manned by doctors from the departments of Pediatrics and Pediatric Neurology, along with the team from Pallium India tries hard to offer that missing support system. Pallium India offers them symptom control, free medicines and supplies, the services of a physiotherapist and a clinical psychologist, home visits for the bed bound, food kits for the very poor and vocational rehabilitation for many.
The children and parents had a day of reprieve from the grey environment that life has plunged them into. One could feel the presence of God there!
Mr Kemp Battle from USA, a management expert, spent three months with us, helping out with whatever needed to be done. An exceptional human being with varied capabilities, what Kemp gave us was himself. Pallium India and all the team were enriched by this generous gift. Kemp has returned to USA, but is going to work with us from USA.
Dr Odette Spruyt who heads the Palliative Care Department at Peter McCallum Cancer Centre in Melbourne, Australia, has been a friend of palliative care in India for about 15 years. Pallium India had a gift of more than one month of her time. She came with her delightful family – Alan, a lawyer, who is a key functionary in “Australasian Palliative Care Link International” and her sons Joseph and Gabriel. She spent a week teaching at the first 6 weeks’ course at our new collaboration – the palliative care training centre at Bhagwan Mahaveer Cancer Centre at Jaipur and also gave us three weeks at Trivandrum, teaching, planning Hamrahi program and research activities and generally making things happen. Thank you Odette, for being a partner.
The annual conference of the Indian Association of Pediatric Surgeons of Kerala at Kottayam on 22 December 2013 included a session on “Withdrawing and with-holding life support” in which Pallium India led the discussion.
This takes us one step forward in our mission to end the aggressive intensive care that is meted out to patients even when they are surely dying. We are happy to continue what we started on 24 August 2013, on the 9th anniversary of Dr Elisabeth Kubler Ross’s death.
Thank you Dr Madan Mohan for making the discussion possible, and thank you Dr Chandran, Head of Pediatric Surgery at ICH, Medical College, Kottayam and colleagues.
- exclusion from economic opportunities and denial of social benefits, condemning millions to poverty;
- deprivation of decision-making authority over medical care, personal finances, and property;
- inheritance laws forcing widows off their land and allowing relatives to seize their property;
- unavailability of needed health services by trained professionals, and mistreatment and denial for being too old;
- violence in institutional and long-term care facilities, and even in their own homes.
Just look around you and you can see all these problems right in front of you. Fortunately, palliative care organizations, by and large, have included care of the elderly as part of their mandate.
Pallium India had its 10th birthday on 15 February 2013. We got several gifts, but the most precious of all came from Sunitha, daughter of Rahmath who died 2 years back.
If you do not remember Rahmath, please see what we wrote about her on these columns. She was one of the exceptional people with whom our team had the privilege of walking with.
Sunitha, Rahmath’s daughter, is by no means rich. She is one of the many in our country who struggle to eke out a living from a low-paid job and to make both ends meet for the family. Sunitha had astounded us after her mother’s demise by donating half her modest inheritance to Pallium India. When we protested and asked her to think again whether she could really afford to, she said, “I have no choice; this is what my mother would have wanted”.
The picture shows Rahmath with Sunitha and the grandchildren.
Sunitha won a modest lottery last week from Government of Kerala’s “Karunya” lottery scheme in which all profit goes towards care of patients who need more support than what the Government’s system is able to give them. She won Rs. 5000. She gave one-fifth of it to Pallium India – our precious 10th birthday gift.
Dr Judith McEniery is a dear friend of Pallium India from far away Ipswich in Australia. When Judith got married to Kevin (see picture) several years back, they had asked all invitees not to give them gifts, but to give it all as donation to Pallium India.
Recently, when Judith celebrated her birthday, again on her request, the guests donated to Pallium India. It came to a substantial amount. Thank you Judith for modeling the way.
World Innovations in Health Summit discusses End of Life Care
The Global Innovations in Health summit held at Doha came to an end on 11 Dec 2013. The day included a 75-minute panel discussion on End of Life Care. Global experts in health care and ministers acting as panelists discussed the need for us to accept death as the inevitable consequence of life. They forcefully argued for improved advocacy and improved care facilities to make End of Life care as dignified as possible. The importance of pain relief and of access to opioids was emphasized as essential parts of End of Life care.
It is indeed remarkable that a two day summit on “Health innovations” had more than a half day dedicated to End of Life Care. With the whole globe giving more attention to End of Life Care, perhaps we can stop being afraid of dying.
The World Innovations in Health Summit (WISH) was held in Doha, Qatar, on 11th and 12th Dec, 2013. More than 700 experts in health care attended the summit, from 65 countries.
The star attraction was the famous keynote speaker and Nobel laureate Ms Aung San Suu Kyi, from Myanmar. Having spent much of her life in jail, Suu Kyi is currently leading the country towards a healthy future. Suu Kyi started by saying that health, to her, is not only the treatment of diseases, but something involving “care.” Without care, health system is meaningless. To her, health has to comprise of looking after the person as a whole, addressing psychological, social and spiritual issues.
In her own words,
“Health care is not just about hospitals, but about the human spirit that will enable human beings to care for themselves and to care for others.”
“Do not think of health care in terms of technology and medicines alone. Think in terms of nurturing health in all domains so that we shall be able to live harmoniously in a state of happiness, serenity, mutual respect and support.”
“The kind of health care that I look forward to is one that is rooted in humanity and spirituality.”
Suu Kyi’s subject of discussion was not Palliative Care. But everything that she said about health care was what all Palliative Care people practice, day in and day out. Suu Kyi’s keynote address again brings home the point that Palliative Care is not something to stand alone, but one that should permeate into health care as a whole and cause a transformation, bringing into it humanity and compassion.
Through most of the world, the term palliative care is used synonymous with hospice care. In USA, however, there is a clear distinction.
And while palliative care includes end-of-life care, palliative care is much more – starting when disease-related suffering starts and going hand in hand with curative treatment.
This recent New York Times blog brings clarity to the issue.
There have always been questions raised about the ethical propriety of the pharmaceutical and allied industries sponsoring doctors’ travel for attending conferences. It is only one part of the problem, though. (You might care to read what David Henry and Joel Lexchin have to say in THE LANCET • Vol 360 • November 16, 2002.
India Medical Times reports on 17 December 2013 that GlaxoSmithKline (GSK) … announced the start of a two-year process during which it will begin a consultative process towards stopping direct payments to healthcare professionals for speaking engagements and for attendance at medical conferences.
“At the same time, the company will increase its focus on developing its multi-channel capability and alternative approaches to enable it to continue to provide appropriate information about its products and to support medical education for healthcare professionals,” according to a statement by the company.
Hmmm; We share the common man’s fear of long words and start wondering what lies behind the words “multi-channel capability” and particularly “alternative approaches”!
posted by palliumindia in Newsletter