It is wonderful to get bouquets; but brickbats help us to improve.

We got such an opportunity recently during a support group meeting for the bereaved. While speaking of his experiences, a gentleman who had lost his wife a month ago said he was very thankful to us for having looked after his wife so well. Doesn’t it feel wonderful to be appreciated? It sure does!

“But,” he said, “no one ever asked me how I felt or how I coped. I was going through Hell. I did not feel it was right to ask for help when you were all so concerned about my wife.”

What an eye-opener! We had been feeling complacent that we had taken due care to include the family under the umbrella of our service, and here was this man telling us we had missed something, failed somewhere; there had been a lack, a deficiency.

He reminded us to always ask, particularly when the person appears to be strong and apparently coping well. Those obviously weak always get attention…isn’t there a saying, a crying child gets its milk? It is the one who seems to cope that might be suffering the most…so, let us look beyond the face to what could be happening behind the façade… we learnt that we need to be more alert, more vigilant.

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Pallium India-USA at Sevathon 2010

Pallium India-USA had it’s very first event at the Sevathon at the Sunnyvale Baylands Park in California, thanks to the initiative of its founder-president, Dr Jerina Kapoor.

It was attended by an estimated 2,500 people, and the atmosphere was full of enthusiasm and good cheer. It was a great opportunity for us to introduce ourselves to the local community as well as the other Indian charities.

People were very curious about palliative care issues and the work being done by Pallium India. Our colorful booth was manned by Uday, Abhilash and Jerina, and people found our collage informative. Many promised to attend our upcoming event on Sept. 26th.

Thank you Neethu Raj, Arnavaz Wadia, Rashna Wadia and Pushpa Menon for helping us put this together. A very special mention and thanks to Smita Patel and Abhilash Rajagopal without whose selfless work this event would not have been possible.

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Indian Journal of Palliative Care Now in PubMed

Great news! The Indian Journal of Palliative Care has been indexed by PubMed!

Hearty congratulations to the editor Dr Sushma Bhatnagar for her hard work and commitment in making this happen. We are all proud of your achievement, Sushma!

The IJPC is now available through: AMED, Caspur, DOAJ, EBSCO Publishing’s Electronic Databases, EMCARE, Expanded Academic ASAP, Genamics JournalSeek, Google Scholar, Health & Wellness Research Center, Health Reference Center Academic, Hinari, Index Copernicus, OpenJGate, ProQuest, PubMed, Pubmed Central, Scimago Journal Ranking, SCOLOAR, SCOPUS, SIIC databases, SNEMB, and Ulrich’s International Periodical Directory.

But perhaps our greatest achievement has been that the journal is available online free! Just visit:  www.jpalliativecare.com

And at this happy moment, let us also gratefully remember the founders of IAPC and of the journal along with its former editors, Dr Mrs. Shah, Dr Prabha Chandra, Dr Reena George and Dr Jacob Alexander who built up the standard of the journal step by step and helped in realization of this dream.

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Sahayatra: Pallium India’s Malayalam Newsletter

We are happy to announce that SAHAYATRA, our monthly Malayalam newsletter, is now available for download from our website.

SAHAYATRA is meant for anyone interested in palliative care – patients and families, palliative care professionals, volunteers and well-wishers.

Download PDF: Sahayatra July 2010

Future editions will be available here: palliumindia.org/sahayatra

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Project Hamrahi Takes Off!

Some time ago, we had reported to you about Project Hamrahi, a mentoring program in which an Australian mentor is to be matched to a budding palliative care center in India with a view to long term relationships and continued support.

Very appropriately, the first ever mentor under the program to visit India has been our long-term friend, Dr Odette Spruyt, Head of Pain and Palliative Care Department, Peter MacCallum Cancer Centre, Melbourne, Australia.

As we write this, Dr Spruyt is in Patna, at the prestigious Indira Gandhi Institute of Medical Sciences (IGIMS), where a joint Pallium India-IGIMS palliative care project took off in 2009.

While addressing a lecture at a Continuing Medical Education (CME) programme on “Pain and Palliative Care”, jointly organised by the Dept. of Anaesthesiology and Regional Cancer Centre (RCC), IGIMS, on 31-07-2010, she stressed how imperative it was to provide emotional support to the terminally ill patients of cancer and other fatal diseases, and their family members, in addition to pain management, so that the quality of life of the last days of such patients could improve.

Dr Spruyt has been working with the palliative care team at IGIMS from July 26 for a week. Addressing doctors, nurses, para-medical, staffs and representatives of NGOs, she emphasized the importance of management of cancer patients which also includes all aspects of communication with the patients and the significant role of family members, society and NGOs in alleviating the patient’s suffering. She also threw light on how to deal with the family members after the death of their relatives.

Dr Arun Kumar,Director, IGIMS; Dr R R Prasad, Head, RCC ;Dr Sukumar Jha, HoD, General Surgery, IGIMS,and anaesthesiologists Dr Ajit Gupta and Dr K H Raghvendra also addressed the CME.

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Great News from Guwahati, Assam

The Regional Cancer Center (RCC) at Dr B Borooah Cancer Institute has created a full time position in Palliative Care.

Dr Kabindra Bhagawati has been appointed as a palliative care physician in that position.

The relevance of this cannot be underestimated.

In Assam, as in the rest of the country, Palliative Care started as a charitable activity. Dr Dinesh Chandra Goswami founded the Guwahati Pain and Palliative Care Society (GPPCS) in May 1999. Since then, GPPCS has been providing palliative care to the patients in the RCC.

One major weakness of the whole palliative care movement in the country has been that integration with mainstream medicine has been poor. But this development in Guwahati is encouraging.

Kabindra underwent a Basic Certificate Course in Palliative Care from Calicut in 1999 and a Diploma in Palliative Medicine from Edith Cowan University in Perth, Australia.

Congratulations, Kabindra and Dinesh! And thank you from all of us for your hard work and commitment that made all this possible.

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FROM THE MEDIA…

Patient Navigation and Doordarshan TV

Thank you, Doordarshan!

The national television channel Doordarshan (Malayalam) has been exceptionally supportive of palliative care. In their live phone-in program, Snehasparsham, palliative care has had a strong presence for the last several months.

One recent phone-in program was conducted by Dr M.C. Rajasree from Pain and Palliative Care Society, Calicut. The nature of questions clearly indicated how commonly patients and families were at a loss about whom to approach for help.

This is particularly relevant in India, where the “general practitioner” is practically non-existent and in practice, patients are left to find out for themselves which specialist to approach.

Dr Rajasree directed each questioner to the nearest palliative care unit for advice. This clearly demonstrates a hidden service that palliative care services are doing. They explain. They talk to patients and help to direct them to the appropriate medical service that would be suitable for them.

But the need for this service is not taken seriously, perhaps. Palliative care services in Kerala have by and large catered to general health needs of people.

Perhaps we need to give more attention to patient navigation?

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Lancet on Palliative Care in Developing Countries

Picking up on the white paper from the Economist Intelligence Unit, the Lancet points out that 40% of the World’s population dwell at the bottom of the end-of-life care rankings:

Painfully slow progress on palliative care

To meet death without a surfeit of pain and discomfort is a fundamental right. Yet, according to The Quality of Death, a report published by the Economist Intelligence Unit, it is a right denied to all but 8% of patients who need palliative care worldwide every year. The authors used a range of indicators to rank 40 countries by the quality and availability of their end-of-life care. The UK holds the top spot overall, bearing testament to the strides made since the foundation of St Christopher’s Hospice—the first dedicated palliative care hospice in the world—in 1967. Globally, however, the picture is one of low standards and slow progress.

Brazil, Russia, India, and China—which account for 40% of the world’s population—occupy four of the bottom six places in the list, along with Mexico and Uganda. But even patients in developed nations such as South Korea (32nd), Japan (23rd), and Denmark (22nd) are being denied access to good end-of-life care through a combination of inadequate policy, poor training, poor access to painkillers, and cultural barriers.

In a world where death and taxes are the only certainties, taxes are considered the more palatable topic for discussion. Death and dying remain taboo subjects in many cultures, which presents a major barrier to improving end-of-life care. Deeply embedded attitudes will not change overnight, but campaigns such as Dying Matters, which launched in the UK earlier this year, show that it is possible to engage with the public and foster an acceptance of death as a natural process.

A more pressing practical concern is that about 5 billion people worldwide lack access to opioid pain relief, mainly because of fears the drugs will reach the black market. Even where opioids are available, inadequate training often means doctors are unable to safely administer them. What is clear is that none of the impediments to improving end-of-life care will be overcome without strong leadership and detailed support from policy makers. With people older than 65 years soon to outnumber children younger than 5 years for the first time in recorded history, time is very much of the essence.

Food for thought, is it not?

Visit the campaign site: DyingMatters.org

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Death with Dignity

An article written by Mr T.V. Jayan in Calcutta’s daily newspaper, The Telegraph, refers to the same white paper and deals with the India’s need for palliative care.  It describes the development of the palliative care movement in Kerala and talks about the deplorable state of affairs in most of the country:

PK. Ashokkumar remembers those days so well. He watched his friend’s wife slowly succumb to the rogue cells that were eating up her body. The two doctors tending 28-year-old Soumini Radhakrishnan knew they couldn’t keep her alive, but were determined that she would die with dignity. Kumar watched while they steered her towards a near painless death — giving birth to a movement that has now swept across Kerala.

Read more at The Telegraph…

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BMJ: The Politics Of Pain

Pain relief is often taken for granted in the Western world, but in about 150 countries the use of morphine is severely restricted, says Tatum Anderson in British Medical Journal, “The politics of pain“.

She investigates how this has come about, and what steps are being taken to stop patients living and dying in extreme pain.

Here is part of what she says about India in the article:

India may be one of the world’s largest legitimate opium growers, but only about 0.4% of the population in need of opioids for pain relief get them, according to figures from 2007.

Restrictions result from an attempt to tackle the growing drugs trade. In 1985 the government passed a law that required pharmacies to have multiple licences from different agencies before they could stock and dispense morphine. The drug then disappeared from the shelves and doctors stopped prescribing it.

Realising the inadvertent consequences of its law, the government then allowed India’s states to amend rules to allow hospices to stock and dispense morphine without complex licensing. The problem is, only a few states have chosen to do so. And the new rules do not affect the onerous pharmacy licensing system, which still applies.

Full text is available if you have access to BMJ here…

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Is India the Worst Place to Die?

India has the 4th largest GDP in the world, but, in terms of providing palliative care, it ranks even lower than Uganda – an economy 90 times smaller than that of India.

In a few years, those aged above 65 years would soon outnumber children under the age of 5; by 2030, their population would touch a billion… a burgeoning section of society whose demands on health care, and specially palliative care, threaten to topple the existing frail systems.

Is it a surprise that in a nation where three-fourths of the population survive a daily existence, unaware how to “live” a life, there isn’t much thought given to how we die? [..] dignity in death is a pipe dream for those who have to fight for dignity in life…

So writes Ameet Bhuvan from Bhubaneswar, India, in response to a Healthcare Report “How We Are Dying?”, featured in the Outlook magazine, which has picked up on the report from the Economist’s Report and Index on Quality of Death and Dying.

But, Kerala stands as a “beacon of hope”. With only 3% of the country’s population, Kerala is not only the lone state to have a formal palliative care policy in place; it also provides 2/3 of the care services available in India, with the government providing funding for community based care programmes.

It is also one of the first of Indian states to relax narcotics regulation to permit use of morphine by palliative care providers.

More interesting insights into this issue are available at Outlook Magazine: How We Are Dying?.

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HAPPY ONAM…

Onam is the annual harvest festival of Kerala, one that symbolises plenty, truth and honesty.

Pallium India wishes all its friends a very happy Onam!

Being a senior doctor and medical Professor, everyone treated me well and with deference during my cancer treatment.

But I still did not get relief from pain. My bone pain induced by radiation was agonizing. I cannot think of a worse experience.

It was as if someone was driving a nail into my leg. Not a small nail either. It simply went on and on. I was told that no relief was possible!

If I, a privileged doctor-patient had this sort of experience, what would be the fate of those patients who are not so fortunate to have such privileges?

This was narrated by one among the 15 lady doctors, all retired Professors from Trivandrum Medical College, who get together every month for a re-union. They call themselves, Aging Gracefully Women’s Group (AGWG).

Thanks to the initiative of our well-wisher, Professor Sara Varghese, Pallium India had the privilege of addressing the group on 10 July 2010, during their get-together at the residence of Dr G Santhakumari, former Director of Medical Education of Kerala. They discussed palliative care and shared their experiences. We left them in an introspective mood, asking themselves an important question, “What can we do to help; to make a difference?”

Some of them are already donors of Pallium India. Thank you for the support and for your interest, AGWG!

STAFF CLUB…

Probuphine Patent for the Treatment of Opiate Addiction

United States Patent and Trademark Organization (USPTO) has granted a patent for a method for treating opiate addiction with a subcutaneously implanted device comprising of buprenorphine and ethylene vinyl acetate, a biocompatible copolymer that releases buprenorphine continuously for extended periods of time (PBR 17/6/10).

Probuphine is designed to deliver six months of continuous, therapeutic levels of buprenorphine following a single treatment.

Every new discovery should excite us; but actually many of us from the developing world are scared of each and every new one. Is this another possibly expensive treatment modality to burden our poor people? Please allow us to keep praying for methadone.

Access CINAHL with IAHPC Membership

Liliana De Lima, Executive Director of International Association for Hospice and Palliative Care (IAHPC) sent us this notice about an invaluable benefit of IAHPC membership, access to the Cumulative Index to Nursing and Allied Health Literature:

We are happy to inform you that IAHPC has acquired from EBSCO the right to access the CINAHL database for our members.

The CINAHL database offers online access to hundreds of citations and also full text access to several palliative care journals.

To become a member of IAHPC, please visit www.hospicecare.com

Quality of Death: Ranking End-of-Life Care Across the World

The Economic Intelligence Unit of the “Economist” and Lien Foundation in Singapore joined hands to produce a white paper on Quality of Death that was published on 14 July 2010. A poor quality of death means intense suffering for the dying person and his family and the situation can improve only with improved access to palliative care services.

The white paper lists 40 countries and ranks them according to Quality of Death. UK ranks first, and sadly, India comes at the very bottom as the 40th, next to Uganda. As a redeeming feature, the exceptional performance of Kerala in this field is highlighted in the paper.
For the entire report, please visit our blog…

RESPONSES…

A Voice from the Kyrgyz Republic

It was deeply satisfying to come across Dr Nargiza Dadahanova‘s kind words of appreciation in our blog, about the work we are doing.

She has shared with us her experiences in the area of cancer treatment in her country. We would like our readers to have an inside view of the state of affairs in palliative care and treatment in a resource poor country like hers, the Kyrgyz Republic. We invite you to our blog to read about her experiences….

Nargiza, we are glad that our blog reached you and inspired you to share your experience with us. Thank you!

We invite our readers in similar circumstances to use this as a platform for showcasing their problems and solutions so that every one can benefit from the fount of collective experience. Contact us via the website…

EVENTS & EXPERIENCES…

Pallium India-USA  Event: Sevathon

Pallium India-USA took part in the Sevathon: the largest community-wide walkathon and awareness platform dedicated to “Seva” or “Service” and to local non-profits who share this principle.

Pallium India-USA envisions an India where every citizen will receive palliative care services. Pallium India-USA seeks to support the work of Pallium India to achieve the Vision by:

• Creating awareness of the serious absence of these services in India in the Asian Indian population in USA, many of whom have family members residing in India.
• By building a community of people to support the work of Pallium India.
• Educate the Asian Indian population about Advance Care Planning, and decisions that they might need to make for themselves and their families here in USA when they are unable to speak for themselves.

We appreciate the efforts of Dr Jerina Kapoor who has initiated this venture and our well-wishers in the USA. For more details, visit our website.

Emmanuel Hospital Association Starts Palliative Care Activity

Dr Ann Thyle, who directs Emmanuel Hospital Association’s palliative care program writes to say that EHA has formally started its activities at Lalitpur.

Operating since mid-March, the project is run by Leela Pradhan, an experienced community nurse, as Home Care Coordinator and Carol Motuz as Administration and Training Coordinator.

Lalitpur is in Uttar Pradesh, the most populous state in India. It houses 2.9% of the world’s population (16% of India’s population). It has negligible palliative care.

We are glad to report that Pallium India’s collaborative project with SGPGIMS in Lucknow- Pallcare Project, has taken off recently.

It is indeed heartening to see the progress in the state. Congratulations and best wishes, Dr Ann Thyle and team!

Palliative Care Updates from Rishikesh

“Train me well, I have important work to do when I get back to Rishikesh” – Sicily Sebastian, when she joined TIPS for the six week Certificate Course in Palliative Nursing (CCPN)

We were touched by her commitment and enthusiasm.

Sicily Sebastian comes from Rishikesh in Uttarakhand, a state having very little palliative care. Ganga Prem Hospice, a new venture, promises some hope of solace to the suffering.

Currently, the Medical Director Dr A.K.Dewan, an oncologist from the Rajiv Gandhi Cancer Institute in New Delhi, travels to Rishikesh, 227 kms away, every month, to help with the efforts. Indian American Cancer Association (IACA) is supporting this venture – one of the several projects that IACA is undertaking in India.

Best wishes, Sicily, Dr Dewan, every one at Ganga Prem Hospice and IACA. Pallium India is proud to be associated with you!

Toolkit Training Programme at Lucknow

A Palliative Care Toolkit Training Programme was conducted at the Sanjay Gandhi Post Graduate Institute of Medical Sciences between 21st and 25th June 2010.

It was led by Dr Mhoira Leng, the director of the international organisation Cairdeas International and the palliative care team at SGPGI consisting of Dr Shakeel Ahmad, Dr Sanjay Dhiraaj and palliative care nurse Alice among others. The group also had interactive sessions with medical personnel from nearby medical colleges.

Around 20 people were trained in 5 days and more than 40 were sensitised to the compelling need for palliative care services in the region. Significant coverage in the media ensured that more and more people who need such services but had no prior knowledge of this form of treatment will now be able to access it.

We are also happy that the team has been able to increase their home care services in the last few months.

Dr Mhoira Leng’s Experiences in Mizoram

As a continuation of Pallium India‘s Pallcare Project in Lucknow, Dr Mhoira Leng, the director of the international organization called Cairdeas International has been supporting us by mentoring in Mizoram and Lucknow.

Dr Leng shares her new and exciting experiences in Mizoram which you can read at our blog…

Dr Shashi Tharoor Visits TIPS

Former Under-Secretary General of United Nations, author and Member of Indian Parliament Mr Shashi Tharoor visited TIPS on the 24th of May 2010.

He took keen interest in the activities of Pallium India and visited patients under treatment and families. He has promised his support to the Palliative Care movement in India.

Starry-eyed fans of Shashi Tharoor can get an exciting account of his visit to Trivandrum from his blog, “After the Storm.”

Kollam Rotary Club Takes on Palliative Care

Kollam West-End Rotary Club’s new president, Dr Riyaz Ahammed assumed chair on 3 July 2010 with an announcement that his club would be taking up palliative care as its major social responsibility this year.

Congratulations, Dr Riyaz and members of Kollam West End Rotary, and thank you for your support to Pallium India.

By the way, Kollam (nicknamed Quilon by the British) is an attractive tourist spot with its beautiful backwaters, about 70 Kilometers north of Trivandrum, the capital of Kerala.

Trivandrum Exhibition by Palliative Care Patients

A wonderful event for those who can get to Trivandrum YMCA on Saturday 24th July:

On Saturday 24th July 2010, you MUST drop in at YMCA (Behind Govt Secretariat) between 9AM and 6PM to see what a group of special people – palliative care patients who are bed-bound or wheel-chair-bound, have created – paintings, dolls, utility items for the home and many things more!

Come and see the exhibits. Your presence itself will be an encouragement to the remarkable people who have created them. If you do want to buy something and take it home, we shall certainly not object!

Our congratulations to Dr Shibu ,our volunteer Physical Medicine specialist (who also thought up the idea) and Mr Sunaj, our physiotherapist, for making this happen and for encouraging the creativity of these people. See you on the 24th!

World News…

Vatican: “Nearly 2 billion people without access to basic medicine”

Archbishop Silvano M. Tomasi, Permanent Observer of the Holy See to the Office of the United Nations and Other International Organizations in Geneva, presented a speech at the UN Human Rights Council.

He focused largely on the need to ensure universal access to medicines.  He highlighted the role of poverty in developing countries, and noted that children are particularly deprived of access to medicines.

The Catholic Church provides a major contribution to health care in all parts of the world – through local churches, religious institutions and private initiatives, which act on their own responsibility and in the respect of the law of each country – including the promotion of 5,378 hospitals, 18,088 dispensaries and clinics, 521 leprosaria, and 15,448 homes for the aged, the chronically ill, or disabled people.

Read more at Fides.org…

Morphine Remains Scarce for Pain Sufferers World Wide

Martha Ann Overland reports for Time Magazine from Hanoi:

After the hospital sent Nguyen Van Dung home to die, his family watched helplessly as he wasted away from complications due to AIDS. And he did not go gently. “He was in such pain,” says Dung’s 73-year-old mother. “It was like seeing him on fire.”

Haunted by his screams, Dung’s sister bought him heroin to ease his pain. Street-grade heroin is hardly an ideal medical choice; it is also illegal. Last month, shortly after Dung’s death, a judge in Nha Trang sentenced his sister to three years in prison. Drug possession — “for any reason,” explained the judge — is against the law.

Whether you will have access to pain treatment depends largely upon where you live. Africa, which has most of the world’s AIDS victims, is a painkiller wasteland. In India, more than a million cancer and AIDS sufferers die each year in extreme pain as cumbersome regulations and paperwork make it nearly impossible to get prescription painkillers. (India produces much of the world’s legal opium, yet nearly all of it is exported to Western pharmaceutical companies.)

Read the rest of this excellent article at Time.com…

STUDENT’S CORNER…

The Palliative Care Training Center at MNJ Institute of Oncology (MNJIO) which was started in 2006 as a joint project between Pallium India, MNJIO and Canada’s International Network of Cancer Treatment & Research (INCTR).

They will be holding a “One Month Certificate Course in Pain & Palliative Care for Doctors, Nurses, Social Workers & Volunteers“. Internationally renowned faculty like Dr Stuart Brown, Director, PAX Program for INCTR will be the external faculty for the course. The course will held in Hyderabad at MNJIO, starting on August 2nd and finish on August 28th, 2010.

All details of  the course including Objectives, Learning Process, Schedule, Fees and Application Form are available in PDF .pdf or Word .doc

For details of Pallium India’s other courses, please visit: palliumindia.org/courses

PARTING SHOT…

Dr B is an Indian doctor working abroad. He has been supporting Pallium India in numerous ways, including reimbursing the salary of two nurses for quite some time now. He rang up recently and informed us of his wish to provide for the salary of one more nurse, so that our service could improve. We asked him if we might acknowledge his contribution in this newsletter. He declined; he wished to stay anonymous. He went on to add,

“My greatest pleasure is the undeterred effort that you have proven capable of, and if one hopeless soul smiles when you come on the horizon, the job is done. Help me find more opportunities for commitment so that I can contribute what little I can towards your vision!!”

You touch our hearts, Dr B. Thank you.

HIV/AIDS patients at National Institute of Tropical Medicines, Hanoi

After the hospital sent Nguyen Van Dung home to die, his family watched helplessly as he wasted away from complications due to AIDS. And he did not go gently. “He was in such pain,” says Dung’s 73-year-old mother. “It was like seeing him on fire.”

Haunted by his screams, Dung’s sister bought him heroin to ease his pain. Street-grade heroin is hardly an ideal medical choice; it is also illegal. Last month, shortly after Dung’s death, a judge in Nha Trang sentenced his sister to three years in prison. Drug possession — “for any reason,” explained the judge — is against the law.

Whether you will have access to pain treatment depends largely upon where you live. Africa, which has most of the world’s AIDS victims, is a painkiller wasteland. In India, more than a million cancer and AIDS sufferers die each year in extreme pain as cumbersome regulations and paperwork make it nearly impossible to get prescription painkillers. (India produces much of the world’s legal opium, yet nearly all of it is exported to Western pharmaceutical companies.)

In East Asia, where European colonial powers once used opiates to subdue much of the population of Indochina, governments retain an almost pathological aversion to opiates of any kind. The geography of pain relief is so skewed that the seven richest countries consume 84% of the world’s supply of legal opiates, according to the International Narcotics Control Board, an independent agency that enforces U.N. conventions. For the estimated 10 million people who are suffering from untreated pain, relief is often found only on the black market, or in death.

The reason that most people have little or no access to morphine is opiophobia, says Dr. Eric Krakauer, a Harvard Medical School professor who helped Vietnam rewrite its medical-use opiate laws. Misinformation about clinical morphine use is rife; even some doctors believe that anyone using morphine will become a drug-crazed addict. While long-term opiate users will become dependant, the effect is reversible. Lost in the discussion, says Krakauer, are morphine’s benefits, particularly to terminal patients with severe and chronic pain.

Read the rest of this excellent article at Time.com…

Two hundred years after it was first isolated from the opium poppy, morphine remains the best drug doctors have to relieve severe pain. It is cheap to produce and can be manufactured for pennies a pill. Morphine also eases the feeling of not being able to breathe, which often happens in the final stages of dying. “It’s painful to watch,” says Krakauer, who believes his own mother was not given enough morphine in her last days at a hospital in Cincinnati, Ohio. “People think that pain and shortness of breath are an inevitable part of death … For dying patients, strong opiates can take away both the pain and the feeling of drowning.”

Pain-law reformers blame the disparity of access to morphine on the decades-old war on drugs. Both legal and illegal drugs fall under the domain of the International Narcotics Control Board. While the agency is tasked with determining the supply of opiate-based painkillers, among other legal drugs, that each country can import, most of its attention and resources go to tackling the world’s supply and sale of illicit drugs. But the group has as much responsibility to provide legal drugs as it does to control illegal ones, says David Joranson, founder of the University of Wisconsin’s Pain & Policy Studies Group, which works with governments to reform their palliative-care laws. In the process of trying to stem the global trade of illegal heroin, “morphine is controlled to the point of not being available,” he says. “The whole thing is like trying to get a car to go backward and forward at the same time.”

The small but growing pain-reform movement is working to bring all countries in line with World Health Organization (WHO) standards, which call for adequate pain relief. But the work has been agonizingly slow. One of the few success stories is Vietnam. Two years ago, the government completely revamped its medical-opiate laws. Maximum daily dose limits were lifted. District and commune health posts were allowed to dispense morphine. Hundreds of health care workers were trained to prescribe opiates.

But even under Vietnam’s progressive laws, patients are finding it difficult to get pain relief. Doctors fear that they will be suspected of diverting morphine to the black market if they prescribe “too many” pills, says Dr. Nguyen Phi Yen, deputy director of the National Cancer Hospital’s palliative-care department. Few doctors dare to hand out more than seven days’ worth of drugs — though by law they can now prescribe a 30-day supply. Pharmacists can also fall under suspicion, so most choose simply to not stock morphine. The pharmacy in the hospital where Yen works — one of only two that dispense oral morphine in the entire city of Hanoi — is filled with a silent collection of gaunt patients and worried relatives waiting to get their prescriptions filled. “Yes, we are concerned that morphine might get diverted to the black market,” says Yen, looking at the crowd. “But we also can’t let patients suffer.”

For Tho Thi Thoan, a farmer in the northern province of Hai Duong, the reforms did little good. Doctors sent her home to die after her breast cancer had metastasized and began eating through the left side of her body. Though her case was terminal, Thoan was given only a week’s worth of oral morphine at a time. With local pharmacies unwilling to stock morphine, Thoan’s husband had to make the journey by motorbike to Hanoi each week. Soon Thoan built up a tolerance, and the medication was not enough. “She needed more pain relief,” says her husband, but the doctors wouldn’t give her more. “It was terrible. She cried. I cried.” In December, Thoan, age 40, died at home and in agony.

The number of people who will need pain relief will rise sharply in the coming years. In the next decade, mortality from HIV/AIDS is projected to increase fivefold in Africa. Cancer, once regarded as a disease of industrialized nations, is now occurring in epidemic proportions in developing countries, where smoking and exposure to carcinogens are on the rise. The WHO predicts that by 2020 there could be 15 million new cancer cases every year — a 50% increase — and most of them will be in the developing world. Most sufferers, too, will die from their disease: because of a lack of early detection and access to treatment, by the time cancer patients in the developing world see a doctor for the first time, 80% will be terminal.

Until doctors feel confident prescribing opiates and pharmacies are willing to dispense them, families will be faced with stark decisions as to how to ease the suffering of those sent home to die, says Kimberly Green, a palliative-care expert in the Hanoi office of Family Health International, a health-development organization. Drugs bought on the street are unlikely to be safe or affordable and could, as they did with Nguyen Van Dung’s sister, result in a prison sentence. In the face of intolerable pain, many will choose to take that risk, but it’s not a fair choice to have to make. More needs to be done, says Green. Something is wrong when it’s “easier to buy heroin than it is to buy morphine.”

Stepping Out…Beyond The Window…

Eleven families got together at TIPS (Trivandrum Institute of Palliative Sciences) on May 16th, 2010.

Families of 11 special people who are all paraplegic. Most have been confined to their beds till Pallium India reached them.

The palliative care organizations in their own areas (we call them our Iink centers) arranged for their transport.
The major objectives for arranging such a meet were:

• To get them out of their four walls. This trip symbolised a major step forward in their struggle for independence.
• To build a forum for them so that they form their own support system.
• To explore greater opportunities for vocational rehabilitation for thousands like them
• To have some fun (The day ended with an hour of spell-binding magic presented by Magic Academy, Kochi.)

They had inspiring stories to share …stories of real life…of courage, acceptance, perseverance and optimism against backdrops of tragedy, rejection, despair, apathy and insensitivity of the society they live in, brightened at times by little rays of light and hope…the essential humanity of man.

Four years ago, as he was preparing himself for his law studies, 20 year old Gokul was involved in a car crash which left him a paraplegic. After agonising years of trying to put his shattered life together, he went back to his Law Academy, this time, on a wheel chair. There were many steps to negotiate to get to the classroom. He met the head of the institution. Could they construct a ramp so that he and another student similarly disabled could get to their classes? Not only was the request turned down, it was also insinuated that his presence in the institution was emotionally distressing for his fellow students.

Many such stories of official insensitivity and social neglect and apathy came to light …but, there were also glimpses of beacons of light and hope. A young man whose own family rejected him was cared for as their own by his wife’s parents and siblings. Another had surrendered himself entirely to God Almighty and thanked Him for preserving his life. And there was Vijayaraj, who writes poetry holding a pen between his palms, because he had lost the use of his fingers. He sang an invocation that he himself had written and composed.

What was strangely fascinating about these special people was that almost all of them had such happy faces. And the show-stopper was Preetha who could never stop giggling even as she described the arduous journey uphill for about 200 meters the team which carried her and her wheel-chair had to undertake, to reach a path from where she could use her wheel chair.

Ever-smiling Preetha handing over a flower which she has made to the Chief Guest Shri M Ayyappan

She had got through to the Chief Minister at one of his phone-in programs on television and asked for a path from her house to the road on which she could travel by wheel chair. She was instructed to file an application with the local administration. However, the office wanted her to appear in person; it was not their concern that she could not walk. But Preetha was not disheartened. She heard about palliative care on the radio and eventually found the palliative care volunteer Lijo. Palliative care relieved her of her central pain. Lijo provided her with raw materials with which she could make dolls, plastic flowers and bead necklaces with her hands. She proudly displayed her wares at the meet and everything was sold out. She went back with a large order for more.

The group decided to have an organization of their own and left with an action plan for the future.

Congratulations Mr Sunaj, Dr Baburaj, and Dr Shibu and the rest of the team for initiating the program and for carrying it through so successfully. And our special thanks to our long time friend and well wisher Mr Bruce Davis from UK, who is supporting us in numerous ways with his encouragement and funding the physiotherapy project.

Sometimes, all it needs is a helping hand to raise someone and help him walk back to the road of life.

STAFF CLUB…

Alarm Bells About Chemicals and Cancer

photo credit: BrittneyBush

The US President’s cancer panel is reported to have made the following recommendations, according to a report in the New York Times

• Particularly when pregnant and when children are small, choose foods, toys and garden products with fewer endocrine disruptors or other toxins. (Information about products is at cosmeticsdatabase.com or healthystuff.org)
• For those whose jobs may expose them to chemicals, remove shoes when entering the house and wash work clothes separately from the rest of the laundry.
• Filter drinking water.
• Store water in glass or stainless steel containers, or in plastics that don’t contain BPA or phthalates (chemicals used to soften plastics). Microwave food in ceramic or glass containers.
• Give preference to food grown without pesticides, chemical fertilizers and growth hormones. Avoid meats that are cooked well-done.
• Check radon levels in your home. Radon is a natural source of radiation linked to cancer.

A Deadly White Dust

Woman filtering asbestos

Melody Kemp from the Society for Environmental Journalism writes about how Western countries banned asbestos and how then the industry shifted its focus to developing countries.

In 2006, she says, India imported 360,000 tonnes of asbestos.  And in 2008, India – along with Pakistan, Canada and Russia – rejected the banning of chrysotile asbestos mandated under the Rotterdam Convention on Prior Informed Consent.

Asbestos-related diseases cause a very painful and slow death.  She points out how vast the suffering is and how even palliative care is not available to the sufferers.  She writes:

The pain of mesothelioma and other asbestos-related diseases can be agonising and requires another white powder – morphine – to provide relief. Ironically many of the countries where asbestos disease is rife, such as India, have a shortfall in the supply of legally scheduled opiates. There is no shortfall in asbestos.

Read the full report: http://www.chinadialogue.net/article/show/single/en/3600

Part one of the report here: http://www.chinadialogue.net/article/show/single/en/3597-A-deadly-white-dust-1-

Indian Express: Weekend Visits

The Indian Express has come out with a news item about some palliative care activity in New Delhi.

The North of India has so little palliative care and any new activity is such good news!

Every weekend, volunteers of DNipCare, a palliative care group, visit people in pain. They don’t claim a cure, only a little comfort.

What are you doing this Sunday? Would you like to drive up to a hospice, next door to Safdarjung Hospital, and meet Rajesh Bhakt, a 19-year-old terminally ill cancer patient?

Read more at Indian Express…

Free Resource: PalliativeDrugs.com

With the cost of textbooks and journals remaining what it is, this is a precious site that provides essential independent information for health professionals worldwide about drugs used in palliative and hospice care.

The content is based on the UK Palliative Care Formulary (PCF, 3rd edition) which was Highly Commended in the British Medical Association 2008 book competition. It includes details about unlicensed (unlabeled) indications and routes, and the administration of multiple drugs by continuous subcutaneous infusion.

To access the site, it is necessary to register:

• Click on ‘To register for access..’ to create your own username and password.
• They will ask you to provide contact and other details, including your registration number with a professional body like the Medical, Nursing or Pharmacy Council of India.

PalliativeDrugs.com is a free-access resource. You can help them to remain that way by buying books published by PalliativeDrugs.com from their bookshop, e.g. Palliative Care Formulary, Hospice and Palliative Care Formulary USA, Symptom Management in Advanced Cancer, and by completing market research surveys when invited to do so from time to time.

Once registered, they recommend that you first read “Getting the most out of the PCF3“.

PROJECTS…

Hamrahi – APLI & Pallium India Joint Project

Hamrahi means fellow-traveler. Well, that is exactly what a group of Australian doctors plan to do – travel with us on the difficult journey that many of our patients have to go through.

Project Hamrahi is a collaborative venture between Pallium India and Australia Palliative Link International (APLI). (Thank you Dr Nirmala, for finding such an appropriate name for the project!)

The concept took birth at Perth, during the joint conference of Asia Pacific Hospice Network (APHN) and Palliative Care Australia (PCA).

Dr Odette Spruyt (a friend of Indian Palliative Care) from Peter MacCallum Cancer Center in Melbourne had given a talk based on her Indian experience, and several Australian doctors came forward to help. Discussions between Dr Odette Spruyt and Pallium India gave clarity to the idea.

Project Hamrahi is designed to fill a certain need. As it stands now, doctors and nurses get trained in palliative care for six weeks. Once they go back to their home towns, they are on their own to fight a thousand barriers, with negligible support.

Project Hamrahi envisages continued mentoring by one expert – hopefully matching one expert with one palliative care program on a long term basis.

In preparation for the project, a preliminary workshop has already been held in Melbourne.

ACCOLADES…

Lisa Pain & Palliative Care Society’s 10th Anniversary

On 01 May 2000, Mr David Joranson, director of the WHO Collaborating Center at Madison-Wisconsin, formally inaugurated the Lisa Pain and Palliative Care Society at Tiruvambady, a small town in the outskirts of Calicut.  Housed in a private hospital as its charitable arm, it was founded by the owner of the hospital, Dr P.M.Mathai.

In 2003, they started home visits and a few years back, an inpatient wing for palliative care was added.  The work involves both the hospital and the community and out of about 100 volunteers, about 20 attend to the work on a regular basis.

The institution celebrated its 10th anniversary on 01 May 2010.  The festivities started with a rally by school students, scouts & guides and volunteers followed by a public meeting.  The most noticeable feature was the joy and enthusiasm of the team of volunteers.  Their sense of achievement and fulfillment were obvious.

Best wishes Lisa PPCS!

Institutions like yours have a special place in development of palliative care in the country – that of integrating hospital based practice with community based work.

Indian Palliative Care Featured in APLI Newsletter

… see palliative care practised at the highest level with limited resources was inspirational.

The April issue of Australia Palliative Link International newsletter features mostly India.

Several authors write about their experiences in Trivandrum, Trichy and Delhi. In the issue:

• Developing collaborations with Pallium India and APLI – Dr Odette Spruyt
• Palliative Study Tour – Dr Anil Tandon
• Reflections on Trichy Palcon 2010 – Dr Sok Hui GOH
• Impressions of TIPS at Trivandrum – Dr Judith McEniery
• A student visit to TIPS – Teresa McEniery
• Mapping the CanSupport Journey – Harmala Gupta
• Palliative Care Snapshot – Dr Naveen Salin

If you are an Indian, it helps to see how others view this country.

If you are not, well, this may prepare you to understand our problems on the palliative care front a bit better.

Click here to download APLI’s April Newsletter…

STUDENTS CORNER…

Six Week Certificate Course at TIPS

Those who wish to apply for the course starting on the first Monday of July (5 July) or subsequent alternate months, please apply using the application forms here: palliumindia.org/courses

International Palliative Care Network Poster Exhibition 2010

Palliative Care Network Community (PCNC) will host the International Palliaitve Care Network Poster Exhibition-2010.

The top three posters will receive: 1st Prize : US $ 500 / 2nd Prize: US $ 300 / 3rd Prize : US $ 200

The lead authors of all accepted posters will receive an e-certificate. Lead authors of all outstanding posters wil receive an e-certificate with an honorable mention.

Participation is open to all palliative care professionals from across the globe.

Deadline for poster submission: 11:59 Eastern Time (USA), August 31,2010.

We look forward to your participation in yet another unique and innovative endeavor - click here for details…

PARTING SHOT…

Teresa McEniery, an Australian teenager, came to visit us. On her return, she wrote about her experiences in the APLI (Australia Palliative Link International) newsletter.

She says she came:

as an unconvinced and unmotivated prospective medical student, with the hope of gaining deeper insight into the reality of medical practice

She was touched by how

the palliative home visit team often sat with the patient and their family, talked with them, ate with them, and on occasion, cried with them

She says,

To see medicine practiced in such a different context, entirely stripped of the business-like character that is at risk of developing, and simply a case of human beings doing all that they can to help other human beings, was inspiring

and concludes,

If this is what medicine can be, then this is the work that I want to do.

Dear Teresa, thank you for your kind words about our team, but you also make a very important point about medical education. Seeing is believing. Medical students anywhere must be given an opportunity to see palliative care being practiced. Seeing it once or even for a few days may not change their practice all the time, but at least there will be the realization that medicine need not necessarily be all technology, and what genuine compassion can achieve is amazing.

STOP PRESS…

All of us heard with mind-numbing shock the news of the horrible air crash at Mangalore in South Karnataka on 22nd May in which 158 lives were lost.

8  survived miraculously, among whom 3 are in a critical state. In the midst of this terrible tragedy shines the  heriosm of the local population. They rushed to the site uncaring of the risk to their lives, improvising with available resources to work hand in hand with the official force.

Their service was invaluable; their humanity, incomparable. Such experiences exemplify the spirit of volunteerism that the Palliative Care Movement has brought to the surface in this country.

We salute these heroes.

• What is life like for the young people, often young men in the prime of life, who are paralysed for life from a fall from a height, a road traffic accident or a tumour?
• What problems plague them once the hospital has fixed their spine and left them to their fate in their own homes with practically no support at all?

We come across not only tales of sorrow, pain and suffering, but also of courage, determination and selfless service among those confined to a bed.

Trivandrum Institute of Palliative Sciences (TIPS) is proud to be able to work with these young people.

On Sunday the 16 May 2010, we have arranged to bring twelve of them together at TIPS for a day of clinical service, education and entertainments.

Specialists in Neurology, Psychiatry, Urology, Physiatry and others will be on hand for consultations and advice. The meeting will also initiate a vocational rehabilitation program specifically for this group.

We hope to end the day with an outing to the seaside!

We need your good wishes!

Conveying powerful messages about untreated pain and about end-of-life decisions. Very very powerful.

Of course it is all about USA.

So when you have finished watching it, please give yourself a minute to think about 80% of the world – the developing world.

What sort of torture goes on there?