September 2011 Newsletter

2011 September 30
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We Waited a Long Time for This Day!

For Trivandrum Institute of Palliative Sciences (TIPS), the flagship of Pallium India, the 5th of September was a special and joyous day.

The Palliative Care Clinic at Government Medical College, Trivandrum, was formally inaugurated on that day by the Hon. Minister for Health, Mr Adoor Prakash.

Many dignitaries including the Director of Medical Education and the Deputy Director of Health Services attended. Even more remarkable was the fact that the hall was full despite the medical students being on a week’s holiday!  With that sort of enthusiasm for the project, we are bound to succeed.

The clinic has been on a trial run for a few months now, but it is official now!

It is run by the department of Community Medicine (led by Dr Vijayakumar) with the support of Pallium India. A doctor, a nurse, a social worker and volunteers from Pallium India attend the clinic which functions three days a week – Monday, Wednesday and Friday. Three doctors from the department of Community Medicine have already completed palliative care training at TIPS and more of them plan to follow.

This is a large hospital where mostly poor people go to, and there is a vast sea of suffering there.

Thank you Jiv Daya Foundation, for your generous support to Pallium India for the project!   

“Snehasanthwana Samgamam”: Coming Together in Love and Care

Pallium India, together with National and District government authorities, is organizing a get-together for patients in and around Trivandrum, Kerala, particularly those who are bed-bound round the year – a day full of fun, laughter and entertainment.

We  hope that the event will give our patients and people from the community the opportunity to interact, empathise and join hands to further the cause of palliative care.

There will be a discussion with officials from the Kerala Social Security Mission on the different schemes and benefits available to patients.

Volunteer artistes will come together to sing to celebrate Voices for Hospices, followed by a magic show to entertain the audience. The patients along with their families will be then taken on an outing to the Museum.

PLEASE JOIN US!

Those who can, please join us on World Palliative Care Day for this uplifting event!

If you can’t make it to Trivandrum, there are plenty of events around the World, look for your nearest location here…

Union Health Minister Mentions Palliative Care at UN General Assembly

The Union Health and Family Welfare Minister Shri Ghulam Nabi Azad, while addressing the High-level Meeting of the United Nations General Assembly on the Prevention and Control of Non-Communicable Diseases which began on 19th September 2011 at New York, made a special mention of palliative care as one of the strategies for controlling Non-Communicable Diseases (NCDs).

He mentioned that by 2012, 100 district hospitals in the country would have palliative care facilities.

Shri Ghulam Nabi Azad informed that alarmed by the rising incidence of the non-communicable diseases and its impact on the health care delivery, a national summit was held in India subsequent to the Global Health Ministerial Conference on Healthy Lifestyles and Non-communicable Disease Control in Moscow in April 2011.

“Besides the Delhi Call for Action from the national meet, we now also have 10 key messages from the recently held WHO South-East Asia Regional meeting at Jaipur in India”, he added.

The Union Health Minister emphasized that Non Communicable Diseases are not only a health issue but also a development issue as they impact productivity and also impoverish the society due to high health expenditures. Therefore, the Government of India has launched a “National Programme for Prevention & Control of Cancer, Diabetes, Cardio Vascular Diseases (CVDs) and Stroke (NPCDCS)” and the “National Programme for Health Care of Elderly (NPHCE)”. This has been taken up for implementation as a pilot project covering 150 million population in 100 inaccessible and most backward districts during the current financial year (2011-2012) at a cost of 275 million USD.

The program includes several components such as: Establishment of Non-Communicable Diseases (NCD) clinics at 100 district hospitals and 700 Community Health Centers (CHCs) for diagnosis and management of Cardiovascular Diseases (CVD), Diabetes & Stroke and Cardiac Care Unit in district hospitals; ensuring availability of life saving drugs – wherein an additional 1,250 USD will be provided to each district hospital in 100 districts; For early detection of cancer common diagnostic services are being provided at these 100 district hospitals. Provision is also being made for basic surgery, chemotherapy and palliative care at these hospitals; For supporting Chemotherapy, drugs will be provided in these 100 district hospitals for 10,000 patients at the cost of 25 million USD; In addition, 65 centres are being strengthened as Tertiary Cancer Centres (TCCs) to provide comprehensive cancer care services at a cost of 1.5 million USD each.

Telemedicine, a New Endeavour with HP India

Hewlett Packard India, under its Corporate Social Responsibility Program (CSR) has taken a decision to join hands with Pallium India in supporting its continuing endeavour to bring palliative care to those in pain and despair.

HP’s objective is to support Pallium India with innovative technology solutions to multiply its ability to reach out to the community at large  in providing palliative care. HP India and Pallium India have signed an memorandum of understanding (MOU) through which HP will be providing Information and information and communications technology (ICT) based solutions, static as well as mobile  to maximize its capabilities by introducing ‘Virtual Health’ concepts which will be fully funded by HP India.

Virtual Health and Telemedicine facilities can bridge a lot of gaps and imbalances in doctor patient ratio in rural area.

Virtual health is all set to become a reality starting with EMR (Electronic medical records) which will effectively reduce paper work by digitizing medical records like lab reports, diagnostic images and reports, medication and inter department communication.

The mobile telemedicine unit will be of great service to the patients. The unit will have all the digital medical equipment necessary to bring quality health care to the patients door step.

What is more laudable is that HP’s health division is handing over the equipment free of cost to Pallium India, the ultimate result being the immeasurable relief to the helpless suffering patients who have no where else to turn to.

Health for Older People

When our team goes out on home visits, every single day we are confronted by the plight of the elderly in our society. Globalization and nuclear family system having destroyed the support system that existed in the last generation, the elderly are too often left with  no one to attend to their health or their well being.

The problem of course is not specific to India, but holds true for most of  low and middle income countries. Mr Diederik Lohman of Human Rights Watch writes to inform us about the call for action by Navanetham Pillay, UN high commissioner on human rights who specifically refers to the need for palliative care for older persons.

Governments Must Make Health Of Older People A Priority, Says Un Rights Chief – New York, Sep 16 2011

With the number of people aged over 60 expected to reach 2 billion by 2050, or more than a fifth of the total global population, discrimination against old persons should rank among the most pressing policy issues for governments and societies, the United Nations human rights chief said today.

“Regrettably, prejudice against and stigmatization of older persons [known as ageism] are consistently reported everywhere in the world,” High Commissioner for Human Rights Navi Pillay told the UN Human Rights Council’s panel on the right to health of older persons, citing discrimination based on age in areas as vital as social protection policies, employment laws, and access to public services.

“Its intimate link with the right to health has particular relevance. Health lies at the heart of all human rights issues when we age. Research shows that health tops older persons’ issues of concern. Problems such as lack of adequate diagnosis or treatment, lack of trained staff or home-based services, or difficulties to access reliable health information are often cited.”

She cited a report on ageing by Secretary-General Ban Ki-moon to the General Assembly highlighting the fact that age often defines whether someone is allowed access to medicines, treatment, devices or long-term care. Many older people say that their age alone is handled as a disease and that they are often dismissed without proper diagnosis.

Ms. Pillay underscored the lack of adequate services, facilities and care, or their prohibitive costs, with estimates showing that only one in five persons aged 60 or more has a pension. Without a pension, older persons may well be confronted with poverty, while stress about the affordability of health services leads to or is compounded by unattended chronic diseases, malnutrition and lower standards of living, she noted.

“A social protection system is crucial, and States are required to allocate sufficient resources and facilities to cope with these demands now and to prepare for the future. The unique requirements of older persons must be incorporated in national health systems, especially in low- and middle-income countries.”

She said tackling the lack of specialized services such as residential centres, home care programmes and geriatric services, age-friendly primary health care, and palliative care must be a priority.

“Adequate access to palliative care is essential to ensure that these people can live, and ultimately die, with dignity,” she declared.

What is it Like to be a 13-year-old with Cerebral Palsy in India?

And what is it like to be his single parent when the boy is unable to walk, stand or even sit up without support?

The single parent who can no longer earn a living because there is no one else to look after the boy?

Please take a minute to read an article from the New Indian Express of 16 September 2011:

Care from a mother’s heart

Could it be sheer coincidence that we came across a 13-year-old spastic child Arun  G Raj at Panathura, near Kovalam, and perhaps the most personal book by Arun Shourie on his spastic child, the same day?

The answer eludes us, but seeing Arun and his absolutely devoted mother Ajitha leaves us with the same question Shourie asked – ‘Does He know a mother’s heart?’, the title of his book.

Confined to a brick-walled room, that is so dark that one has to squint to see the twisted body of a teenager on the floor, Arun looks up at the light streaming in through the open window. Then suddenly you realise that he was responding to a crow crying on the tree outside. The crow stops and he loses interest.

His lips move, but you don’t hear a thing.

Read the full article at Express Buzz…

To add to what Reema Narendran says in the article, the boy needed to see his doctor regularly to keep his convulsions under control and for the myriad ailments that he is subject to. He could have free consultations in the Government Hospital, but with his condition being what it is, it was impossible for them to handle the hours of waiting in the crowded hospital corridor that would be necessary.

A kind pediatrician offered to see him at her residence free of cost in the evenings, and that was such a relief for Arun’s mother; but then Government of Kerala banned private practice by doctors in Government service, and the pediatrician no longer wanted to risk being seen seeing patients at home.

Fortunately, at this time, Pallium India’s TIPS found him and started giving him home visits.

Now our doctor, usually the pediatrician in our team, visits him periodically. We provide him not only his diapers, but also all his medicines free of cost and a monthly food kit.

But, how many tens of thousands of children and families like him are denied any care in our country?

An Indian Book on Palliative Care

But, not just another book on Palliative Care!

Dr Dinesh Chandra Goswami, the palliative care pioneer from Guwahati Pain and Palliative Care Society, Assam, India, has published a book, “Palliative Cancer Care: Our perspective”.

And before anyone says to oneself, “Oh, yet another book on palliative care?”, let me add that this book is special.

It is special because it has such strong roots in India. It certainly draws on what the West has learnt and taught on palliative care, but has a solid foundation built on experiences on Indian soil.

Looking at it superficially, you will notice that the book is bilingual – with English as well as an Assamese version.

When you look deeper, you will also find an all-pervading air of spirituality. I am sure many would find the sections on Yoga and Self-Awareness interesting.

This is not a textbook on Palliative Care. It is a collection of essays from the author, translated into English by his wife Mandira Sarma.

Published by Lakshmi Prakashan, Mathura Nagar, Guwahati, 781 006, India. Contact Dr Goswami at: goswamidcg [at] gmail.com

– This news was also published in the IAHPC’s September newsletter

Share to Care News

Here in Trivandrum, Kerala, we have just finished celebrating Onam, the harvest festival in Kerala. It is a time of family reunions and celebration, with sumptuous feasts on banana leaves and gifts of new clothes to the near and dear.

Soon after Onam, we got a visitor, Dr S. Valsala Devi, a Professor of Pathology, one of the many who had signed up for our “Share to Care” program.

Every Onam, my three sons bring me gifts of new clothes. Too many!  This time I told them, if you want to give me some gift for Onam, give it for “Share to Care”

And here is the money!

Thank you Dr Valsala Devi for this thoughtful gift!

“Share to Care” is the program that we launched three months ago, where well-wishers sign up to share something for the needy when they celebrate something like a birthday or a festival or when they observe a loved one’s death anniversary.

We already have more than 100 people who have signed up for “Share to Care”. Would you care to?  It would take only 3 minutes of your time.

Please go to: http://palliumindia.org/SharetoCare

New Edition of the Palliative Care Formulary

Dr Michael Minton from UK writes to tell us about the new 4th edition of the Palliative Care Formulary (4e).

Over the last 13 years the Palliative Care Formulary has been the definitive source of reference for the drugs we use in palliative and hospice care, published in the UK and edited by Drs Robert Twycross and Andrew Wilcock.

They and the editorial team have just updated and expanded the formulary, the 4th edition will be available from the 1st October 2011. Press release at palliativedrugs.com, buy online at PalliativeBooks.com for a pre-publication 10% discount.

If Pallium India may add:

Even with the pre-publication discount, the price of £45/Rs3,300/$72 is a lot for resource-poor countries.

If any of our well-wishers would like to gift the book to us, it will be more than welcome! 

We shall keep the first copy for the training center at Trivandrum and send any additional copies to other training centers in India that we are associated with.

EAPC Opioid Guidelines for Cancer Pain

The European Association of Palliative Care (EAPC) are updating their guidelines on opioids for cancer pain.

As part of this review they have undertaken 22 systematic reviews of topics relating to opioid treatment in cancer pain. These are published in the journal Palliative Medicine July 2011 vol. 25 no. 5389-390 (pubmed).

While they do highlight the limits of research in this field, they do provide the most up  to date  and comprehensive review of what we know about the use and side effects of opioids.

The EPCRC project to revise the European Association for Palliative Care (EAPC) guidelines on the use of opioids for cancer pain

In this special issue of Palliative Medicine, systematic reviews contributing to the development of the revised European Association for Palliative Care (EAPC) guidelines on opioid analgesics for the management of cancer pain are published. This brief comment tries to put this quite unique collection of coordinated articles in the context of the overall guidelines project and to help readers to make the best use of them.

The European Association for Palliative Care (EAPC) guidelines on opioid analgesics for the management of cancer pain were published in 1996 and 2001 and were seen as an evolution of the World Health Organization (WHO) recommendations, developing in detail the role of opioids in the analgesic ladder. The impact of WHO and EAPC guidelines on clinical practice and patient outcomes has never been demonstrated empirically, but it is likely that they had a profound influence.

Thanks to Dr Michael Minton for sending this news

District Level Palliative Care in Andhra Pradesh

In 2006, the Regional cancer center at MNJ Institute of Oncology (MNJIO), Hyderabad joined hands with International Network for Cancer Treatment and Research (INCTR) and Pallium India to start a palliative care training center.

We had recently reported to you the success of this center in starting a pediatric palliative care fellowship as well as in working with the Government to simplify narcotic regulations in the state and to sanction a full-fledged department of Palliative Medicine at MNJIO.

Now advocacy by MNJIO’s Palliative Care Training Center has had another success! The Government has plans to make palliative care available at District level.

Global war on drugs denies morphine to patients

We recently blogged about a documentary, “Freedom from Pain”, on the need for pain relief created by a group of students at the University of British Columbia School of Journalism.  The documentary was broadcast by Al Jazeera, watch it here…

The work, and with it the pain problem in the World, is receiving more international attention. Most recently, in Canada’s Vancouver Sun, examples from India, Uganda and Ukraine are quoted and special mention of the positive movement in Kerala:

Global war on drugs denies morphine to patients: UBC study

A study by University of B.C. journalism students says the global war on illicit drugs is preventing patients suffering terminal illnesses in some countries from having sufficient access to morphine to control their pain.

The year-long study done by the UBC Graduate School of Journalism involved teams travelling to India, Ukraine and Uganda to see how those countries manage pain.

The results of The Pain Project can be found at www.internationalreporting.org/pain.

The report was released in advance of a United Nations conference in New York this week on the global challenges of treating cancer and other diseases.

Prof. Peter Klein, UBC’s acting graduate-school director, said that unlike many global health problems, pain treatment is not about money or lack of drugs, as morphine costs pennies per dose and is easy to manufacture.

He said bureaucratic hurdles and the chilling effect of the war on drugs were the main obstacles to morphine access in some countries.

“The story of global morphine shortages is one of those issues that both the media and the medical community has overlooked,” said Klein.

He said he became interested in pursuing the story after talking with a member of Doctors Without Borders who’d found a lack of morphine in a number of countries he’d visited.

“For instance in India, which is the largest supplier of medical morphine in the world, it’s virtually unavailable in most parts of the country except for one state [Kerala],” said Klein.

Klein said some countries, such as India, had over-reacted to UN regulations regarding access to opiates — an unintended result of the war on drugs.

Uganda was chosen an example of a third-world success story on how the issue could be overcome, while Ukraine was a case study in the problems caused by too much bureaucracy in cancer care.

The website offers videos from each country showing how patients there struggle with pain.

One shows a former Ukrainian KGB officer dying of prostate cancer who sleeps with a gun under his pillow “in case the pain becomes unbearable” while another shows an Indian doctor frustrated with drug laws who mixes readily available analgesics to ease the pain of his cancer patients.

A third shows a Ugandan nurse who led a movement to reform that country’s drug laws around morphine distribution and palliative care.

Good News from Guatemala!

Here is a piece of good news from the Developing World. The palliative care pioneer from Guatemala, Eva Rossina Duarte, writes to say:

I’m happy to let you know that, on Sept 21st we will start our first Palliative Care Specialization Study for Physicians at University of San Carlos, the public university in Guatemala.

I’m in the academic commission that organized it, I’ll be one of the professors and also a student.

In this first cohort, 25 Faculty of Medicine Professors will be invited to participate in order to start a palliative care network in public “school hospitals”, and in future introduce palliative care into doctors’ Medical careers.

We’ll invite also physicians that are working in Palliative Care already to recognize their practice.

We wish Eva and her colleagues at Universidad de San Carlos de Guatemala the best for this important study!

LIFE Before Death Series continues…

The “Life Before Death” series of short movies continue to be released one every week. They are not only very informative to the public; but also make powerful advocacy material for the palliative care community. Here are the 5 films released in September:

Thank you, Mike Hill and team of Moonshine Movies and thank you, Lien foundation,International Association for the Study of Pain, The Mayday Fund, the Union for International Cancer Control and The Institute for Palliative Medicine at San Diego Hospice International Programs.

For more information and to view the entire series, visit the Life Before Death website…

The “D” Word

From the Widow’s Voice (“We write about widowhood as we live it. Together we examine the good, the bad, and the ugly parts of life as a widowed person.”) blog:

the “d” word

In preparation for my son’s first day of Kindergarten today, I attended an interview with his teacher yesterday. It mostly entailed questions of, “Can he tie his shoes?”, “Does he feel shy in new situations?” and “Can he wipe his own bottom?”

At the end of our little meeting, his teacher asked about his special interests. I listed off his favourite play things (Lego, cars, his bike), the things he likes to do with his friends (swim, play hide-n-seek, jump on a trampoline) and his favoured topics of conversation (monster trucks, chickens and death).

His teacher stared at me for a moment after the latter item. “Oh…,” she replied, “What does he say when he talks about death?”

“He often ponders over what it feels like or what you see when you die. Sometimes he wonders when he or I will die,” I told her in a tone that suggested this was common-place and not really worth a huge amount of detail.

She listened with a faint look of concern on her face. This look turned soft as she asked, “Do you think he would benefit from speaking to our school counsellor?”

I suppose with the fact that this, death, is such a common topic in our house it hadn’t occurred to me that this type of conversation might be cause for concern at his school. I thought for a moment about her suggestion. An avalanche of thoughts tumbled around in my brain, “Is it bad that he talks about death? But I want him to feel comfortable talking about his concerns! Are other parents going to be upset when their child quotes my son’s occasional morbid thinking? I can’t guarantee that he will even say anything to other children. Are his questions abnormal? This IS normal to him!”

August 2011 Issue of Sahayatra Malayalam Newsletter

We are happy to announce that the August 2011 issue of SAHAYATRA, our monthly Malayalam newsletter, is now available for download here…

IAHPC Membership Recognition – Win an iPad!

If you are not a member of the International Association for Hospice and Palliative Care, please consider becoming one.

They have a graded membership fee structure which makes it affordable even for people from poorer countries. Traveling scholarships for training anywhere in the world form an important opportunity for members. In addition come many fringe benefits.

Please see the announcement about the IAHPC:

IAHPC Membership Recognition Contest

We are delighted to announce that the IAHPC have designated October as our Members’ Recognition Month in order to build awareness and understanding of the vital function that our members play in the advancement of our mission as well as to formally acknowledge their support.

IAHPC will be giving a prize in the following two categories…

1. Recognizing Loyalty

Goal: to maintain the loyalty of members by giving a prize among those individual and institution(s) who keep their membership active.

2. Increasing Membership

Goal: to increase the number of members by giving a prize to the current member who brings the highest number of new or renewed members.

New Partnership with Child Family Health International

We are glad to report that Pallium India has entered into a new alliance with Child Family Health International (CFHI) for a cultural immersion program.

CFHI was started by Ms Evaleen Jones when she was a young student. It has grown to a very successful organization, and Pallium India is proud to be associated with CFHI, thanks to the introduction by Dr Jerina Kapoor, founder of Pallium India-USA.

Recently, two representatives from CFHI, Mr Steve Schmidbauer and Ms Hema Pandey spent a few days with us in Trivandrum before rushing off on their numerous projects in various parts of India.

They have reported on their visit at the CFHI blog, here’s an excerpt:

A Day in the Life – Implementing Palliative Care in India

As we drove into some of the poorest communities in Southern India, Dr. Raj and his team, a nurse, a social worker, and a driver went about their routine. Patient files are reviewed as we travel in the van. The size of the patient files is notable. After Dr. Raj read the file a bit, he begins to tell us the context of the family we are about to see.

We get a succinct yet thorough description of the family composition and history. The level of detail is impressive and we even had a few questions about the family that Dr. Raj answered from the record.  I asked him when he last saw the family and he said that this was his first visit to them.

There are three other teams conducting home visits and so the family has been seen by the other teams in the past.  It is amazing to see the level of detail that is recorded from the home visit.  From these notes, other services from nutrition, to physical therapy, to social work are provided –all driven initially from the teams’ weekly or fortnightly visits.

Thank you, Steve and Hema!

Pallipedia and Pallium India

Pallipedia is an initiative of the International Association for Hospice and Palliative Care (IAHPC) – a palliative care “dictionary” edited by IAHPC’s chairman Dr Roberto Wenk and its executive director Ms Liliana DeLima.

For the last few months, Pallium India has been working with IAHPC, contributing as many as 15 words a week.

Read more at IBN Live “Pallium India emerges a major contributor” and in the September 2011 IAHPC news.

Would you like to contribute?

Please help us in our effort to give clarity to phrases and concepts, please write to us…

Rahmath Lives On in Memories and More!

Sunshine Mugrabi, from California, visited Pallium India’s Trivandrum Institute of Palliative Sciences (TIPS) in early 2011 where she met a patient who touched her heart. Her name was Rahmath and suffered from an advanced incurable illness.

Sadly, Rahmath died recently at TIPS. Rahmath was a humble person, poorest of the poor in material wealth, yet when she died, obituaries came in from many parts of the world! (see the comments here)

Earlier this month Sunshine just gave a talk at the San Francisco End of Life Coalition. As a follow up she was interviewed by the SevenPonds blog, where Sunshine talked about Rahmath. Here are some quotes:

“The thing that was so amazing about her was that she was always smiling. I can’t think of her face without thinking of her smile and her beautiful shining eyes.”

“She was calm, even though it seemed as if she had more hardships that any person should have. She had had a very, very challenging life. And somehow she took it in this spirit.”

“I feel like her smile is with me for the rest of my life. I was incredibly sad, but it was also bittersweet.”

“Death is the most profound experience you’re going to have, besides birth.”

Please read the full interview at SevenPonds:

Parting shot

Rahmath’s story does not end there! Sunitha, her daughter, called us the other day.

She says she wants to do something for her mother’s memory. Something that will help others. She has nothing to give; so she wants to pledge her eyes and her organs on her death. She seeks our help to get this done!

Do you know this feeling, when one feels so very small and humbled?

Truly, words fail!

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