Published on: February 21, 2011

Opener…

The patient in the next bedOur medical social worker Aneeja Mariam Joseph recounts this experience that one of our patients with advanced cancer shared with her.

The man was in agonizing pain for weeks when he was in the Government hospital waiting for surgery. An occasional injection given only on some days would give him partial relief for a few hours.

One day when the pain was particularly bad, he begged for some pain relief, adding that he had not slept for several days, to which his doctor responded:

“What do you want me to do? Sing a lullaby and rock you to sleep?”

Well, the doctor probably will never get to hear what his patient or others felt about it.

The man says, “I wanted to stab him with a knife… It has been one year, and even today I cannot forgive that fellow”. Aneeja’s thoughts when she heard this story:

“I was at first angry, and then felt hurt. We, as health care professionals are “trained” to care for the patients. We get trained for two, three or five or more years to become professionals and of course, we get our highly esteemed degrees. It seems that somewhere along the way, our sensitivity, warmth and compassion die out. We are no longer human, but just the prefixes to our names or the degrees we earned.”

Does the doctor’s behaviour come out of helplessness, because he has not been empowered to treat that pain? Or is it sheer arrogance and abuse of power, just because we can get away with it? Or both?

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Government of India’s Opioid Availability Plans

We have good news!

The Government of India Department of Revenue has always been proactive in the matter of opioid availability. Initiatives by David Joranson, his team and partnered by Indian palliative care workers (since 1994 and continuing now) were so well-received by the department that the 1998 recommendations for model rules  have now been accepted by 14 states in India.

Additional support came in the last few years from the WHO’s Access to Essential Medicines programme pioneered by Dr Willem Scholten, advocacy by Human Rights Watch, the positive approach from the International Narcotics Control Board (INCB) and from many other sources, not to mention the persistent and continued support from David Joranson and his team.

Recently, Mr Pavel Pachta, who heads INCB, visited India and had meaningful interactions with stakeholders in the field.

On the 1st and 2nd of February 2011, the Department of Revenue conducted a two day conference in Parliament House Annexe. There were about 100 participants – almost every state was represented by their Drug Control and Excise departments. One half day was spent on deliberations about availability of opioids for medical purposes.

The very fact that the meeting dedicated so much time to this subject shows the importance that the department is giving this issue. In general, the meeting agreed on the following matters:

  1. Instead of only “morphine for cancer pain”, the model rules of the Department of Revenue hereafter would recommend the availability of “opioids for pain management”.
    • This would mean that in future we should be able to access opioids other than morphine for treatment of severe pain conditions, when the patient does not tolerate morphine.
  2. The Drug Controller General of India would initiate the process for making methadone available in the country.
    • At the moment, it is manufactured in India for export, but not sold in the country.
  3. The Department of Revenue will work with State Governments to simplify their narcotic regulations and to put in simple standard operating procedures.

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Pallium India-USA Takes Next Step on National Floor

Ms Hetal Sheth from Pallium India-USA reports:

Pallium India-USA took another step forward and participated in the National Health Care Decision Day ( NHCDD) planning conference call on 12th February, 2011.

It was not face to face , but Dr Jerina Kapoor and I felt the presence of over 6o organizations in a forum, in discussions for how to increase awareness of the importance of filling out Advance Health Care Directives. The participants included many Hospice Care Nurse Directors, Medical Bioethics Directors from hospitals, social workers, community educators, Palliative care managers from hospitals, mentally disabled care center Directors and local community organizations.

The conference call was arranged by The Coalition for Compassionate Care of California and managed by the Executive Director Judy Citko, POLST Program Manager Erin Henke and Nathan Kottkamp attorney from the east coast, leading the NHCDD.

Some of the key points brought out were that any one over 18yrs of age should fill out a Directive, as most of the publicized national cases have been for young people like the Teri Schiavo case. All of us are potential patients or candidates who might one day require these Directives. Also, it is not just about filling out a form, but for it to be done in a thoughtful way to express one’s own value system and wishes. It was about empowering the individual with resources and tools to manage one’s healthcare. There was also sharing of resources, and Pallium made useful contact with two other organizations.
National Healthcare Decision Day is April 16th , and California in addition has a Healthcare Decision Week in late October/early November.

Going forward Pallium India-USA decided to make April 16th The National Healthcare Decisions Day a meaningful one for it’s own community.

Pallium India-USA aims to empower individuals before they become patients and make their wishes known to their families before losing their decision making ability.

Hetal Sheth-Geriatric Pharmacist, Pallium India-USA

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Making a Difference in Mumbai

Why should a busy surgeon in Mumbai, who has to run a hospital, help manage the Indian Journal of Medical Ethics, teach as a visiting professor at the famous Tata Institute of Social Studies, indulge also in palliative care?

That is what Dr Nobhojit Roy does. Why? Because he sees it as a pressing social need. He cannot bear to see the needless suffering and do nothing!

Dr Nobhojit Roy looks after the health care needs of a population of 100,000 people – employees and families – covered by his organisation’s medical care program – a system designed like the UK‘s National Health Service.

It shows that it is indeed possible to have a system of socialized health care system in a developing country; and what is more, that it can incorporate palliative care.

Thank you, Dr Roy, for providing a model to emulate!

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Hearty Congratulations to Dr Sukdev Nayak!

Dr Sukdev Nayak, the palliative care pioneer from Cuttack, Orissa, has been appointed the director of Acharya Harihar Regional Cancer Centre.

This is the first time that a palliative care physician has been appointed in such a prestigious post. Naturally, this carries with it enormous potential in terms of integration of palliative care in cancer treatment and also in terms of outreach.

Dr Sukdev Nayak had his palliative care training from Oxford and then set up the first palliative care service in Orissa in 1994.

Under his leadership, Orissa became one of the first states in the country to simplify the narcotic regulations. He has always been an active member of the Indian Association of Palliative Care and was its president in 2006-2008.

Pallium India joins the palliative care fraternity in the country in wishing Dr Sukdev Nayak all the best!

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December 2010 Issue of Sahayatra Malayalam Newsletter


We are happy to announce that the December 2010 issue of SAHAYATRA, our monthly Malayalam newsletter, is now available for download here…

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Iowa Comes Back to Trivandrum!

For the second time, a team of students from University of Iowa (USA) came to Trivandrum for a three-week course from 29th December, 2010 at Trivandrum Institute of Palliative Sciences.

There were 13 undergraduate students from various health-related courses in the group accompanied by Professor Joann Eland – a great friend of the Indian Palliative Care scene from the time of her first visit in 2009 (pictures).

We enjoyed having these young people with us, studying palliative care, the local culture and also having a good time.

We thank Professor Rajagopal Rangaswamy of University of Iowa for arranging this.

Jo is also a great photographer, we are sure you’ll find her photo galleries a treat!

2010: 13 students and me (66 pics) & 2009: Hospice in India – Pallium India (320 pics)

Read some wonderful feedback that we got from the students, on our website…

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IAPCON 2011: Indian Association of Palliative Care International Conference, Lucknow

Generally, there was euphoria in the air during the annual conference of Indian Association of Palliative Care (IAPV) at Lucknow. The good feeling was about the recent decision by the Medical Council of India to start post-graduate (MD) course in Palliative Medicine. During informal and formal meetings, IAPC, under the leadership of its president Dr Nagesh Simha and its secretary Dr Anil Paleri decided to proceed with a curriculum development so as to be ready to submit it to the MCI as and when necessary.

The theme of the conference was “Networking in Palliative Care”. The sessions by Mr Gopinath Parayil, stimulating all participants to make use of modern IT technology to improve networking was one of the highlights of the meeting. The participation by India Government’s Revenue department (represented by its Director of Narcotics Sri Rajesh Ranjan Srivastava was another. Yet another was the powerful presence of JivDaya Foundation (JDF) which now supports many palliative care centers by capacity building.

Over the next weeks in our blog and in our next issue of newsletter, we shall continue to provide you with more information on these developments.

We congratulate Mr Piyush Gupta of Cancer Aid Society and his team on the success of the conference.

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Cardiff University and the Commonwealth Scholarship

Cardiff University and the Commonwealth Scholarship Commission (CSC) are offering a wonderful opportunity for doctors in India to develop their palliative care knowledge and gain a well recognised qualification – The MSc/Postgraduate Diploma in Palliative Medicine. The CSC will pay the student’s full course fees.

Applications need to be made in the next few weeks. If students miss the deadline they will not be able to be considered.

  • The deadline is MAY 30th 2011

Students must complete TWO electronic applications – ONE for each of the following:

  1. Commonwealth Scholarship Commission
  2. Cardiff University

To apply for the scholarship visit the websites above and follow the online instructions.

To apply for a place on the course visit the C.U. website above, School of Medicine, Postgraduate taught courses and complete an online application form for The Postgraduate Diploma in Palliative Medicine.

All applications can be done on line – you will also need to have 2 supporting written references which can be faxed or scanned and uploaded.

The minimum requirement in English to be accepted for the course is a score of 6.5 in the IELTS test or equivalent completed within the last 2 years. Alternatively we may be able to accept verification from a professional referee regarding your English Language proficiency. These references MUST contain information on your ability to read, write, speak and listen in English.

Where the course application form asks about funding, enter that you wish to be considered for a scholarship from the Commonwealth Scholarships Commission.
Successful applicants will hear from us by July 1st 2011

Accepted students will need to attend the Compulsory teaching in Bangalore – Autumn 2011

Our course website for more information is www.pallium.cardiff.ac.uk
Our contact telephone number is 00 44 2920 196838

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Congratulations to Dr Sithara Raman, Dr Suraj V V

The International Palliative Care Network conducted a poster exhibition. There were 46 entries. We are glad to announce that a poster submitted from Pallium India won the third prize. The poster describes how Pallium India goes about establishing community based palliative care services.

Click to view larger

Hearty congratulations to the authors, Dr Sithara Raman and Dr Suraj.

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Not Forgetting the Family Members

It is not often that the suffering of a relative of a patient is acknowledged or discussed. But the carer’s problems are usually real and huge when someone has a prolonged debilitating illness.

In a well-written article in the Indian Express, Reema Narendran writes about the problems faced by carers of people with dementia:

Well worth a read!

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Global Cancer Ambassadors

The American Cancer Society‘s Global Team is planning a summit to bring Global Cancer Ambassadors from all around the world to New York City this June. This message from ACS:

We are looking for ambassadors to share their cancer story. They do not need to be professionally trained. They just need to have a cancer story and experience in mobilizing the community around cancer or tobacco use.

We are looking for candidates/ambassadors from India to recommend for this summit.

If you are interested, please fill out the form below and return to wecanweshouldwewill@gmail.com by March 1st, 2011. The subject of the email should be your name and country. The American Cancer Society will be selecting Global Cancer Ambassadors by March 15th, 2011

All travels will be covered. Please feel free to contact me if you have further questions.

Navami Naik, Lead Manager, India Programs
American Cancer Society, Inc.

Download the application form here… [.doc]

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Australia Day Honours to Rosalie Shaw

Dr Rosalie Jean Shaw has recently been recognised in the 2011 Australia Day Honours List.

Rosalie was awarded the Medal of the Order of Australia, an award for ‘Service worthy of particular recognition’, in her case:

For service to medicine, particularly through the Asia-Pacific Hospice Palliative Care Network

Rosalie is a great friend, particularly of the poor and suffering. Please join us in congratulating her on this recognition! It is the least that she deserves!

We had reported on Rosalie’s book “Soft Sift in an Hourglass” in our November 2008 newsletter.

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Attend APHC Conference in Penang with a Rosalie Shaw Scholarship

The Asia Pacific Hospice Network has its 9th Annual Conference on July 14-17, 2011 in Penang, Malaysia.

Please note the closing date for submission of abstracts has been extended to 19 February 2011. If you have plans to apply for the scholarship, you had better submit an abstract before 19 February.

APHN Rosalie Shaw Travelling Scholarship 2011

This scholarship was created in honour of Dr Rosalie Shaw, to enable APHN members from resource-limited countries to attend the Asia Pacific Hospice Conference (APHC).

  • The successful applicant will receive support up to USD1,500 to fund conference registration, travel and accommodation.
  • Closing date for application: 9th April, 2011
  • Application must be supported by two APHN members.
  • Incomplete applications will not be considered.
  • For assistance, please contact the APHN Secretariat at aphn@aphn.org

Dr Edi Tehuteru of Jakarta, Indonesia, was the inaugural recipient of the scholarship. He shared how the experience had benefitted him:

As a paediatrician that takes care of cancer patients, I was introduced to paediatric palliative care in 2008. In 2009, with the support from “The Rosalie Shaw Travelling Scholarship”, I’m able to attend the 8th Asia Pacific Hospice Conference in Perth for the first time.

It really opened my eyes, give me a lot of inspirations, and I learned many things from this congress.

When I get back to my work, I start more seriously running the paediatric palliative care programme in my paediatric cancer ward. Our team consists of 2 paediatricians and 2 nurses. We create systems and policies that suit with our condition. For home care program, we work together with Rachel House Foundation. It’s the first foundation in Indonesia that concern in paediatric palliative care and I was appointed as the medical consultant.

Since 2010, besides focusing on children with cancer, the foundation expands their focus also on children with HIV. Paediatric palliative care is new for most of our people. That is why we still work together in socialising what is paediatric palliative care programme all about to communities and not forget the health workers.

I hope, one day the Indonesian will be more aware about paediatric palliative care and no more children have to suffer and die alone.

By Edi Setiawan Tehuteru, Recipient of the 2009 Rosalie Shaw Travelling Scholarship
– January 2011

Further details from APHN Secretary, Wei-Yee on our website…

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Health care Costs Controlling by Focusing on the Neediest Patients

Atul Gawande writes in the New Yorker about Camden, New Jersey:

1% of patients account for 30% of the city’s medical costs

Most of these costs are unnecessary, like the woman with a headache who kept going back to the emergency room because she could not bear the pain, and would get a new MRI scan every time.

That is the United States, would it matter at all here in India?

The same 1% of patients would hardly matter at all to the Indian Government, because the Government does not pay for their treatment. All their treatment costs are out-of-pocket.

So, they and their families would try hard to raise the money, would fall into a debt trap, family relationships may break down, their homes would be taken over by loan sharks, their children would starve and drop out of school, and then we shall be angry about the rising crime rate!

A few of us would weep over an occasional Suma and then… isn’t Suma nearly forgotten already?

Please read what Gawande has to say in  “The Hot Spotters” at The New Yorker website.

It will do us good to read about heroes like Jeffrey Brenner and about several ordinarily-insignificant, but very real people like Vibha and Jayshree.

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Ecuador Takes Oral Morphine Another Step Forward

Liliana De Lima, executive director of International Association for Hospice and Palliative Care writes to notify us that oral morphine is now in the essential medicines list in Ecuador!

Far away in India, we share the happiness of many people in Ecuador and elsewhere who tried hard to make this happen.

Another step forward!

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Pain Relief as a Human Right?

Should it not be?

This was one of the major points discussed during a meeting organized by the International Federation of Health and Human Rights Organisations (IFHHRO) in Amsterdam on 20-21 January 2011, with support from the Open Society Foundations.

Taking part were World leaders from Human Rights Organisations:

and from the Pain and Palliative Care field:

How much of access to pain relief and palliative care can be considered a basic right in the developing world? It would be no use bringing in unrealistic norms which cannot be achieved!

The group unanimously agreed that while the degree of care would be dependent on availability of resources, there would be some minimum standards that any country can and should provide. Like immediate release oral morphine.

The group worked on the draft of a declaration, that should take final shape in the next few weeks.

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Ten IAHPC Traveling Scholarships to Portugal

The International Association for Hospice and Palliative Care (IAHPC) is pleased to announce 10 (ten) scholarships from the IAHPC Traveling Scholarship Program, to help support the travel of palliative care workers in developing countries to the 12th Congress of the European Association for Palliative Care (EAPC). The EAPC Congress will take place in Lisbon, Portugal May 18-21, 2011.

IAHPC application guidelines are as follows:

Applicants must be living in a developing country, be active members of IAHPC, and actively working in palliative care. Applications from physicians, nurses, psychologists and other disciplines are welcome.

If you wish to apply and are not an IAHPC member, you may join by clicking http://www.hospicecare.com/join.htm

Preference will be given to individuals who have not received an IAHPC grant in the past three years with accepted poster or oral presentations in the Congress. Applications are available through the IAHPC website in http://www.hospicecare.com/Travellscholars/

Please send proof of acceptance of the poster or oral presentation, along with a copy of your current CV. Selected individuals are also eligible to receive a discounted registration fee from the Congress.

Deadline to apply is February 25, 2011. Results will be announced by March 1st.

Additional information about the EAPC Congress can be found in http://www.eapc-2011.org/

Best regards, The IAHPC Office
http://www.hospicecare.com

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Parting shot…

David Oliviere, the Director of Education at St Christopher’s Hospice, writes in response to our December newsletter:

Thanks for another good read in ‘Palliam India Newsletter’ just received. Clearly so much thought goes into producing the newsletter and it is good to have a publication from settings where palliative care is so rapidly growing.

And great news about the MD Palliative Medicine; I am sure the fruits of many from India and elsewhere working for better palliative care.

Good luck for those of you going to Lucknow for the IAPC congress. All good wishes from St Christopher’s!

Thank you David. It is good to know that our efforts are fruitful.

Would anyone who has any comments on the newsletter please submit them via our website…

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